Black Middle-Class Women and Pregnancy Loss : A Qualitative Inquiry 9780739175194, 9780739175187

Citation preview

lack (^Middle- Class Women and cPregnancy £oss A QUALITATIVE INQUIRY

L is a P a is le y -C le v e la n d

Black Middle-Class Women and Pregnancy Loss

Black Middle-Class Women and Pregnancy Loss A Qualitative Inquiry Lisa Paisley-Cleveland, PhD

LEXINGTON BOOKS Lanham • Boulder • New York • Toronto • Plymouth, UK

Published by Lexington Books A wholly owned subsidiary of The Rowman & Littlefield Publishing Group, Inc. 4501 Forbes Boulevard, Suite 200, Lanham, Maryland 20706 www.rowman.com 10 Thornbury Road, Plymouth PL6 7PP, United Kingdom Copyright © 2013 by Lexington Books All rights reserved. No part of this book may be reproduced in any form or by any electronic or mechanical means, including information storage and retrieval systems, without written permission from the publisher, except by a reviewer who may quote passages in a review. British Library Cataloguing in Publication Information Available Library of Congress Cataloging-in-Publication Data Paisley-Cleveland, Lisa. Black middle-class women and pregnancy loss : a qualitative inquiry black middle-class women and pregnancy loss a qualitative inquiry / Lisa Paisley-Cleveland. pages cm Includes bibliographical references and index. ISBN 978-0-7391-7518-7 (cloth : alk. paper) -- ISBN 978-0-7391-8519-3 (pbk. : alk. paper) -- ISBN 978-0-7391-7519-4 (electronic) 1. Miscarriage--United States. 2. African American women--Health and hygiene. 3. Middle class women--United States-Health and hygiene. I. Title. RG648.P35 2013 618.3'9208996073--dc23 2013018761 The paper used in this publication meets the minimum requirements of American National Standard for Information Sciences—Permanence of Paper for Printed Library Materials, ANSI/NISO Z39.48-1992. Printed in the United States of America

Acknowledgments This book is based on my research conducted at the PhD Program in Social Welfare at the Graduate School and University Center, City University of New York. I am so appreciative of the experts this program provided, including Dr. Mimi Abramovitz, whose guidance throughout the dissertation process was invaluable. I would also like to extend my gratitude to Lexington Press, and my acquisition editor who saw value in the subject matter, and exercised patience and support from the beginning. The support of family and close friends cannot go unnoticed, as they provided constructive criticism and encouragement throughout the writing of this book. Lastly, it is difficult to express sufficient appreciation to the women who made this research possible. Their pregnancy stories told in their own words added immeasurable value to this study, thank you.

Contents Preface

ix

Introduction

1

Chapter 1

Early Stages Explored: Life Before and During Pregnancy

Chapter 2

Issues and Outcomes of Prenatal Care: It is Complicated

23

Chapter 3

Women’s Experience with Stress: Dangerous Burdens

43

Chapter 4

Fathers and Pregnancy Involvement: A Role of a Lifetime

67

Chapter 5

Precipitating Causes: Breaking Point

81

Chapter 6

Reflections on Loss, Healing, and Resiliency: Labor of Loss and Sorrow

89

Chapter 7

Making Sense of it All: Expanded Observations

107

Chapter 8

Lessons Learned

123

Appendix A Glossary of Terms Appendix B Biographical Data Appendix C Interview Guide Bibliography Index About the Author

7

139 141 143 147 155 159

PREFACE My research journey deliberately lacked a specific focus in the beginning, but my personal experience helped to fuel my passion on the subject of Black Infant Mortality (BIM). Like most of the women in this study, I had no knowledge that my chances of giving birth to a premature baby were more than twice the rate of my white counterpart. My thoughts at the time of giving birth to our very premature baby girl was “what had I done wrong?” and on my better days this question gave way to an acceptance that “sometimes bad things just happen.” Let me be clear, we were among the lucky ones; our baby girl who came three months too early survived. However, our baby experienced neonatal interventions at a specialty hospital for three months, and we watched and shared tears with parents as they said their final good-byes to their infants. With the calls in the middle of the night warning us of complications and uncertainties if she would survive through the morning, we understood how close we came to sharing the same fate—the death of our baby girl. This experience provided the seeds for this project long before I took personal ownership of the topic as my research focus. There were the haunting questions about what went wrong, which fueled my interest, especially since I did all of the things they recommend a pregnant woman should do. I entered pre-natal care during my first trimester; I was thirty-five at the time, and this was my second pregnancy. I kept all my prenatal medical appointments, I took my vitamins, I ate healthy foods, and I followed my doctor’s advice. I was happily married, we were living comfortably, and we were both solid wage earners. Nevertheless, when I reflect back on my pregnancy story, in its entirety, two things are troubling. One, I was under a great deal of job-related stress, which I did not give importance to at the time; I was handling it. I had no choice; my family needed two wage earners. I did not give the stress it was causing value, as I understood prior to becoming pregnant that I had no options in relation to discontinuing work. I continued with a “business as usual” attitude as did all of the women in this study, although this attitude I was projecting did not match how I was feeling. The other troubling reflection of my own pregnancy story was a conversation I had with my doctor shortly after returning from a visit with my Mom

x Preface

in Florida. My Mom, who held various positions at a hospital for all of her adult life, urged me to see my doctor immediately upon my return home. “You are carrying very low for this period in your pregnancy. Make sure your doctor gives you an internal examination,” she warned. It seemed as though my doctor responded with all of the breath of knowledgeable assurance she could muster and stated, “You are carrying low because your muscles are more relaxed from your previous pregnancy,” almost three years prior. “You are carrying low,” were the exact words shared by a woman in this study used by her doctor. She was placed on restricted activity. In my case, it was clear that there was no room for questions. I accepted this explanation intellectually; she (the doctor) was the expert. However, I had this nagging feeling that there was something wrong. In fact, I have to admit that I felt throughout the pregnancy that there was something “not right” (another common theme that emerged in this study). I could not describe it, other than that. I gave birth two days after that doctor’s visit. Our daughter arrived almost three months too soon and too small. She weighed 2 lbs. and 5 oz. and slipped down to a mere 2 lbs. shortly after her birth. I embarked on this study remembering the trail of tears left by all those women and the families I encountered at the time of the birth of my daughter, wanting to attach a voice and a person to the suffering experienced by so many. As I listened to the pregnancy story shared by each of the women in this study, I was awed by their graciousness and strength in allowing me, for a short period, to enter into very private territory. It is my hope, that I was a good listener and that I will present their stories in their voices in a manner that honors their loss, and gives rise to new knowledge in understanding this stubborn phenomenon, Black Infant Mortality (BIM).

INTRODUCTION “There is something about growing up as a Black-American female in the United States that is not good for her childbearing health.” Dr. R. David, neonatal specialist and researcher (2009) On October 24, 2005 Hurricane Wilma hit South Florida with winds, which measured between 75 and 95 mph, and gusts up to 110 mph. The instruments used to measure the front and backside of hurricane winds were 99.9 percent accurate. Jim Williams, meteorologist, assessed the harm to the Palm trees based on damage to trees in Broward and Palm Beach Counties two weeks after the hurricane hit. He found that although certain Palm trees are almost hurricane-proof (Sabal Palms native to Florida) the 30 ft tall Queen Palm (exotic Palms, native to South America) did not fall despite their vulnerability to toppling in hurricanes. However, in the much higher 120 mph winds of Hurricane Jeanne, only about 70 percent of Queen Palms survived the severe conditions.1 The factors contributing to a Palm’s ability to withstand wind is whether it is native or exotic, the tree’s age, the condition of the soil, and the duration and severity of the winds. While other factors certainly contribute to the ability of Palm trees to withstand hurricanes, native trees have the advantage of having evolved with the climate of hurricane-prone areas, and are much more likely to survive, while trees uprooted from their native countries fair less well as they attempt to adjust to a foreign environment to survive and thrive; an important fact as ways to increase survivability of the vulnerable Palm trees are studied. Perhaps, the real story here is the resiliency of the “exotic” Queen Palm trees, which despite not being native to Florida had a 70 percent survival rate in the most severe hurricanes. On December 25, 2006 Dorothy, a thirty-two year old black married physician gave birth to her first baby at the end of her twenty-fourth week of

2 Introduction

pregnancy. In April, four moths later her baby boy finally succumbed to the enormity of his persistent and varied medical challenges. On March 9, 2005 Alana, a thirty-year-old black married counselor, delivered twins at her twenty-fifth week of pregnancy. The first baby, a boy, was stillborn. The second baby, a girl, lived for six minutes. There are varied and complex factors implicated in Black Infant Mortality (BIM): The uprooting of people from their native land; living through a horrendous history in America; and experiencing persistent hostile social conditions (racism) are factors with considerable consequences and casualties no matter one’s strength, one’s ability to assimilate, or one’s accomplishments. This backdrop is the vein that runs through all of the pregnancy stories of the women in this study and provides an understanding of what makes the black woman’s experience in America different from her white counterpart. It is recognition and value of this common experience which is required in order to make important connections between the complex issues surrounding the study of BIM.2 Although theses factors related to history are sufficiently complex, they only provide the contextual foundation to the issue of BIM and to this qualitative research study, which focused on poor birth outcomes of eight African-American middle class women and their pregnancy stories from preplanning stages to infant death, and beyond. Until recently, the major hypothesis of most of the research on BIM was the implicit role of socioeconomic factors, lack of access to prenatal care, and risk behaviors in explaining low birth rate, and BIM. What we now understand is that even when variables such as access to health care, income, education, maternal age, and marital status are held constant, black women still give birth to babies who die before age one twice as frequently as white women.3 In fact, an NPR documentary on the black and white infant disparity in the Unites States concluded that a college educated African-American women would have a worse pregnancy outcome than her white counterpart without a high school education.4 Perhaps, Dr. David, a neonatal specialist and researcher, provides the most succinct statement reflecting the conundrum BIM poses to the medical community in his statement which opened this book, underscored by the fact that foreign-born black women who give birth in America have better birth outcomes than their African American-born counterparts do, although infant mortality rates for this population also increases by the second generation in the United States of America.5 Although this study is focused on black women born in America, the large disparities in infant mortality rates that exist between white and ethnic minority groups in England and Wales is noteworthy. The greatest disparity involves the Caribbean and Pakistani groups, whose babies are more than twice as likely as white British babies to die before the age of one, tightly followed by Africans.6 An interesting parallel for countries with similar racial histories.

Introduction 3

Infant Mortality: The Disparity Infant Mortality (IM) refers to the number of babies who die before their first birthday. Low Birth Weight (LBW) is the single most important predictor for infant survival for those infants being born too soon and too small.7 Infant mortality rates refer to the rate of infant deaths per one thousand live births. BIM refers to black babies who die before their fist birthday. The National Vital Statistics Reports (January, 2013) indicate that the overall IM rate in the United States for all infants in 2009 was 6.39. For the same year black newborns were more than twice (12.40) as likely as white newborns (5.35) to die within the first year of birth. In some states the disparity widens to almost three times between black and white IM rates.8

The Study The overarching research question which guided this project: given the disparity in the IM rates among middle class black and white women, are there factors attached to the pregnancy experience of middle class black women, which could help in understanding the adverse birth outcomes for this group? This qualitative study targeted a specific sample, which with all things being equal should not experience IM rates at twice that of their white counterparts. The study eliminated variables associated with teenage pregnancies and the poverty paradigm in viewing the BIM phenomena, and instead focused on self-identified American born blacks who were middle-class, professional, educated, and married between the ages of twenty-nine and thirtyfour, with the intent of explicating factors contributing to adverse birth outcomes for this group; a sub-group not studied.9 The time period for the most of the data collected for this study spanned from late December 2008 through late December 2009. The primary source of data was face-to-face in-depth interviews followed by subsequent contacts. The primary tool used for the collection of data was a semi-structured interview guide structured to progressively cover the stages of pregnancy while focusing on major issues (i.e., psychosocial issues, health concerns, events, etc). The recruitment efforts were challenging by the very personal nature of the material, and the by the fact that this population group is not easily accessible as they are usually seen for prenatal care privately. It is no wonder why little qualitative research which focuses on the black women’s entire pregnancy story exists, with no research found which targets middleclass, educated married women who have lived through the experience of infant loss. The women were recruited for this study primarily as a result of

4 Introduction

referrals by professionals who received information about the study primarily via email. The women in this study revisited a space and time of their infant loss and were asked to recall the context and events surrounding their loss. Although, there was initial concern that the women would experience memory lapses, avoidance or a level of discomfort that might interfere in the recalling of such a painful event, what seemed to be true for all of the women was a sense of wanting to tell their story.10 It was also clear that they had not told their stories, in their entirety prior to this study. Some of the questions and probes were successful in triggering memories consisting of rich details previously forgotten. Additionally, the researcher’s personal experience with the issue, and her training as a clinician proved useful in navigating through emotional terrain, in creating a solid rapport with each woman, and in identifying and penetrating critical areas. The study addressed the following areas with expanded discussion which tied in theories and pertinent research findings as the women shared their lived experiences of infant loss: Life before pregnancy and the early stages of pregnancy; the numerous and complicated factors associated with medical care; sources of stress and the women’s experiences with stress; their perception of spouses’ role in relation to their pregnancies; and final reflections on the events that surrounded the end of their pregnancy stories. The final chapter—Lessons Learned—converts the findings of this research study into statements on how to redress BIM now. The aim of this chapter is to introduce a perspective, which rejects the notion that black women and professionals can only wait for some new and effective protocol, procedure, drug, or intervention in the delivery of OB/GYN services before significantly changing the trajectory of BIM. It is clear that black women are not the cause of the problem; however it is clear that the disparity in the IM rates is stubborn requiring some rethinking on how to remedy the issue. Nonetheless, the majority of black women born in America give birth to babies who survive despite a horrific history and sustained adverse conditions in the United States much like the “exotic” Queen Palm trees. Such resiliency is an important fact, a strength, which should remain in our sight as we seek to understand the IM disparity and examine ways to redress.

Notes 1. Mary Duryea, “Winds and Trees: Lessons Learned from Hurricanes,” University of Florida: Urban Forest Hurricane Recovery Series, 2007. http://edis.ifas.ufl.edu/pdffiles/FR/FR17300.pdf (accessed March 2011).

Introduction 5 2. Shelly P. Harrell, “A Multidimensional Conceptualization of Racism-Related Stress: Implications for the Well Being of People of Color,” American Journal of Orthopsychiatry 70, no. 1 (January 2000): 42-54. 3. David R. Williams and Toni D. Rucker, “Understanding and Addressing Racial Disparities in Health Care,” Health Care Financing Review 21, no. 4 (2000): 7590. 4. NPR, “When the Bow Breaks,” Documentary: Racism Harms Your Health 2008, http://www.youtube.com/watch_popup?v=INc1a6u8yP4 (accessed February 2009). 5. Kenneth D. Rosenberg, Rani A. Deseai, and Jianli Kan, “Why do ForeignBorn Blacks have Lower Infant Mortality than Native-Born Blacks. New Directions in African-American Infant Mortality Research,” Journal National Medical Association 94, no. 9 (September 2002): 770-778. 6. Ron G. Gray, et al., “Towards an Understanding of Variation in Infant Mortality Rates between Different Ethnic Groups in England and Wales,” National Primate Epidemiology Unit, University of Oxford (2009). 7. Richard E. Behrn and Adrienne S. Butler, eds., “Preterm birth: Causes, Consequences, Prevention,” Board on Health, 2007. http://books.nap.edu/catalog.php?record_id=11622 (accessed February 2009). 8. T.J. Mathews, and Marian F. MacDorman, “Infant Mortality Statistics from the 2009 Period Linked Birth/Infant Death Data Set,” National Vital Statistics Report, January 2013, http://www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_08.pdf (accessed February 2013). 9. Black and African-American are used interchangeably throughout this book. All of the women in this study are self-identified blacks born in America. 10. Peggy Morton, Perinatal loss and the Replacement Child (New York, N.Y., The City University of New York, 1996).

CHAPTER 1

Early Stages Explored: Life Before and During Pregnancy “His first biological child.” April was twenty-nine at the time of her infant loss, a mother of three (ages six, seven, and nine). All of her prior pregnancies were full-term without complications and from a prior marriage. Charles, her spouse, was age thirtyfive. They were married for a little more than two years prior to this pregnancy. This birth would have been Charles’s first biological child. April, at the time of this pregnancy, was a counselor for high-risk teenagers and spoke about her career as a dancer at length prior to working as a counselor. It was clear that she wanted to convey that her body was physically fit underscoring her feelings of disbelief and confusion around losing her infant. Charles did tech work from home, managed an apartment building he inherited, and owned a small courier business. April has five siblings, raised alongside her maternal aunts, who had very large families, one having thirteen children. In contrast, her husband Charles was adopted and the only child of an elderly couple, both deceased. April’s initial interview lasted several hours in the privacy of her office, as she made prior arrangements for no interruptions. She freely shared personal material and her style of communication included several digressions to expand on issues, or to convey a relevant memory stimulated by a question. It was during one of these digressions that she shared her thoughts around her personal decision to have a baby, prior to any planning conversation with her husband. Her decision seemed tightly tied to wanting to “give” her husband his first biological child; a pressure she apparently placed on herself. April

8 Chapter 1

focused on Charles’s family history, and described the special significance she believed having a baby would hold for her husband, but never included any statements by him on the subject: Yes, I wanted, we wanted to have baby. Charles (spouse) had no children and he was adopted, and his parents were old. They had been deceased now, so this was exciting for him. He had a previous marriage and she had children but they knew their dad, so having a baby now was really his first biological child. So it was a big deal for him.

Pregnancy Stories Begin Why a woman makes a decision to have a baby is more complicated than one would expect. Besides maternal yearnings and cultural pressures, there are often urgent internal calls to satisfy some personal motivation, sometimes not even understood by the woman. The why here is an important question as it may provide clues, especially when combined with other factors such as history, culture, events, and feelings, in forecasting how the pregnancy story might end. This study enters each pregnancy experience at the beginning, through the recollections of eight black American women who candidly shared their personal pregnancy stories starting from the why (pre-conception) to the discovery stages. The exploration starts with the question: are there variables attached to early pregnancy preplanning and discovery stages, which helped to shape the entire pregnancy experience, contributing to poor birth outcomes? The pregnancy story begins by identifying events surrounding the early stages of the woman’s pregnancy that inevitably shaped the entire pregnancy. The themes relate to the woman’s reasons for wanting to have a baby (her decision), planned vs. unplanned (wanted vs. unwanted), key events which occurred during this time frame, and the quality of her support system, along with an integration of the woman’s feelings and thoughts during these important periods. These themes reveal an important part of the pregnancy story linked to findings probably implicated in forecasting the trajectory of difficulties for the pregnancy. In this first chapter, the readers enter into the very private lives of each woman, being introduced to each through descriptive and some contextual information prior to presenting their first account. The women are speaking for themselves, revealing those experiences they deemed important in relation to the above-mentioned stages. The women did not appear to have trouble in returning to and recalling this beginning period of their pregnancy.1 They conveyed this part of their pregnancy story with clarity and thoughtfulness, often revealing a range of

Early Stages Explored 9

emotions as they shared the events. Prominent themes, with explanations and expanded discussion are what follow, starting with the decision to have a baby.

The Decision: Bending Life’s Realities A theme, which surfaced early in this study, was a step prior to the joint pregnancy planning between the woman and her spouse, which included a personal decision by the woman to have, or not to have a baby, but more importantly, the presence of factors, which influenced this decision and shaped the meaning of pregnancy, the why. Such personal decisions ocurred, in some instances, long before the woman and her spouse jointly entered in any planning conversations about having a baby, and in some instances, the woman may have suspected that she was already pregnant. This is important because the personal decision to have a child, did not always match the realities on the ground. That is, the woman ignored contradictory information, which brought into question the timing of a pregnancy in relation to the family’s circumstances. What occurred was the surrender, in most instances, to powerful influences despite rationale or practical reasons for not having a baby. Conversely, a woman may decide for a host of reasons not to have a baby. In either case, the mother’s decision, at this point, could set the stage for problematic issues or create tension between her and her spouse that could affect her entire pregnancy as necessary emotional and practical adjustments occur to have the decision bend to fit the family’s circumstances. For example, April’s internal motivation to “give” her husband his first biologic child must fit into the context of three young children and a full-time job, and may not be in agreement with her spouse’s wish. The prize, his first biological baby made it easier to dismiss contradictory facts. This “personal decision” step for women is not new, but when extracted for examination we must acknowledge that, along with the issues discussed above, reveals a peripheral positioning of the spouse’s role very early in the pregnancy experience. Yvonne was the first woman to pique my curiosity about this as she spoke of an “unexplainable” desire to have a third child, which seemed devoid of a realistic assessment of her financial situation, the challenges of balancing work, children and a marriage, which she admitted were very difficult to handle. Yet she spoke about a longing to have three children, which should have been the case in her own childhood; she lost a twin bother at childbirth, “We were suppose to be a family of five, but were only a family of four.” The existence of external and internal forces was evident in the accounts of the majority of women in this study as they explained why they decided to

10 Chapter 1

have a baby. It should also be noted that of the six women who clearly identified their personal decision about childbirth, one made a decision not to have a baby. Additionally, none of the women experienced prior infant loss. The following accounts reveal the reasons influencing the woman’s personal decision in relation to pregnancy.

Self-Imposed Pressure Yvonne is a thirty-three year old early childhood specialist, and mother of two boys (ages two and four). Her first baby was a full-term pregnancy, born without complication. Her second birth required external cephalic version (turning breech baby in the uterus). The initial interview took place over the course of several hours in her new single-family home located in a suburb of New York, while both children were with childcare professionals. Kevin, her spouse also thirty-three is an engineer, and was at work during the interview. They were married for five years at the time of this pregnancy. Yvonne talked initially about the irony of having to take time off to recover from a torn ligament in her foot, which coincided with her planned maternity leave with her new infant. She shared feeling worried at the time of pregnancy about raising another child on their finances and expressed concern about her energy level, as she found balancing work, motherhood, and being a wife often tiring. Despite her concerns, Yvonne still yearned for a third child and made a decision that the size of her family was to be five. Upon further exploration her motivation was revealed: Umm I felt like, my body needs a rest but, I gotta go get the kids, I gotta go pick them up, or I gotta go cook dinner, or I gotta go to work, or yeah. So you take a little breather and then you get up and you do what you need to. We were supposed to be a family of five, but were only a family of four. My twin brother died during childbirth. I often wonder what that would have been like to have another sibling, to grow up with; two other siblings. I just always wanted three children. I can’t explain it.

There was tension in the relationship between Yvonne and Kevin and communication issues, cited in later accounts. I suspect that some of the tension stemmed from the introduction of a third pregnancy, which exasperated communication issues already present in the relationship. A third pregnancy also brought with it different expectations for Yvonne about work. She now expressed a desire to be a stay-at-home mother. Her husband’s stance, as conveyed by Yvonne, was clear. He was not able to be the sole breadwinner, and still maintain their current life-style. In light of this, Yvonne continued to pursue this “unexplainable” goal, having a third child.

Early Stages Explored 11

Family Pressure Dorothy a thirty-two year old OB/GYN physician had no births prior to her infant loss, and one birth following the loss. Her daughter was almost three years old at the time of the interview. Dorothy’s husband, Derrick, thirty-five year old native of West Africa, was also a physician. The interview took place in their home, located in a suburb of New York, at approximately 9:00 p.m. Dorothy described this hour as marking the start of the second part of her day, which began at 5:30 a.m. Dorothy expressed ambivalence about her decision to have a child, but yielded to family pressure, “I knew they were waiting.” Both her parents and her husband’s West African family wanted the couple to have a family despite the demands of their respective jobs and Derrick’s looming uncertain immigration status: Because you know part of their culture is be fruitful, multiply you know. I mean his mom was like “finally, what took you guys so long?” because we had been married for like three years. I knew they were waiting. My parents are both older, so I don’t think my mother had retired yet, but you know shortly thereafter, and she was looking for something to do (taking care of grandchildren). I knew it was something we both wanted, but never discussed when it should happen.

Biological Clock Linda, age thirty-four, an administrator in the area of human service, and her husband, Jason, age thirty-four, worked as a manager in the airline industry. They were married for four years, with one prior full-term pregnancy, a boy born without complications. Their son was three years old at time of the interview. The primary interview was held in their townhouse located in a suburb of Philadelphia, PA while Jason was at work and their son was at daycare. Linda was anxious to have a second child, because she feared that at the age of thirty-four her biological clock was running out of time: Jason, (husband) often says that I made the decision to have two children long before he knew anything about it. He was right. My biological clock was ticking. I wanted to have a baby, and did not want the gap between my two children to be a big one. For my husband, it really didn’t matter, but I wanted to have another child; I was trying.

Fertility Worries Freddie, age thirty-one, had no prior children. She worked during the night shift as a manager in the transportation industry. Her husband, Eric age thirty-two, worked as a manager in the same field. They had been married

12 Chapter 1

for three years. They recently purchased a single family home in a New Jersey suburb where the major interview took place. Freddie secretly worried about her ability to conceive. She feared that a past abortion might interfere with her fertility. Although there were no conversations with her spouse about pregnancy planning, she knew that they both wanted to have a baby. Her husband was focused on “settling in” to their new lifestyle as homeowners: I knew I wanted a baby and became worried that it was taking so long. I was relieved. I thought there might be some fertility issues. I was feeling guilty. I wondered if I were having problems because I had an abortion several years ago. I didn’t want to say anything, so he would not know that I was secretly trying, you know in case it didn’t happen soon.

Spousal Abuse Alana, age thirty, had just completed her Masters Degree prior to this pregnancy, and worked as a counselor. Phil, her husband, age twenty-nine, was a full-time professional in technology sales. They had two children (ages three and four), both born without complications. Phil was physically and mentally abusive to Alana shortly following the start of their ten year marriage as she describes, “on and off.” Alana, at the time of the interview, was no longer in this abusive relationship but the emotional scars of abuse were evident. There was a sad, but trying quality to her voice. It was clear that this opportunity to share her pregnancy story was cathartic. She stated that she had never talked about it in such detail before, with much of it “being a secret” (the abuse). She at times needed to collect herself, as her emotions became difficult to handle, but she wanted very much to contribute to this study. Alana was the only woman who made a personal decision not to have any more children, due to the abuse she suffered. When she learned that she was pregnant, she made a personal decision to terminate the pregnancy prior to sharing knowledge of her pregnancy with her spouse. Once he learned of her pregnancy, he agreed with her plan to terminate: We were supposed to be trying (working on the relationship), but I did not want to get pregnant again. It was like your typical abusive relationship, umm breaking up, getting back together, breaking up, getting back together. I did not understand myself then it was pretty bad; just being stuck in that place. It was horrible enough without another baby. I was really trying to get out of the relationship; he did not know that.

She continues to explain that she and her husband could not carry out the decision to terminate when they discovered she was carrying twins:

Early Stages Explored 13 I went to have an abortion. I didn’t want to be pregnant. Umm, two (twins) was too much, one was bad enough by itself, but two I, I couldn’t (terminate).

The decision to terminate a pregnancy is a difficult one. In the proceeding sections the accounts of other women will reveal feelings of guilt and anxiety about abortions interfering with fertility.

Planned Pregnancies There is a distinction between a woman’s personal decision and what the literature refers to as a planned pregnancy; the latter assumes involvement of the spouse. Research informs us of the importance of a planned pregnancy as it fosters co-existing behaviors attached to promoting a healthy pregnancy.2 Most of the women in this study (five out of eight) had conversations around pregnancy planning with their spouse, once she decided to have a baby. That is, the woman moved from a “personal decision” about having a baby to communication involving her spouse on the subject. An unexpected finding is that four out of the five women (Wileta, Yvonne, Dorothy, and Freddie) who had planned pregnancies never shared feelings of ambivalence, fears, and pressures they experienced with their spouse. This could be a result of considering such matters “women’s business” yet another example of the peripheral position of the spouse during pregnancy. Yvonne’s reflection on her husband’s response after experiencing infant loss supports the view of “women’s business.” It was as is if she had all along expected him to feel a level of disconnected from his unborn baby. “I was surprised. You don’t think that men connect with the babies as you are carrying them. He was definitely connected with this pregnancy and that baby. I didn’t realize how much.”

Third Baby It is also interesting that for the women, the joint planning phase included reasons and explanations to settle apparent feelings of discomfort or dissonance created by their “personal decision,” in light of the contradictory facts. For example, Yvonne’s “unexplained” desire to have a third child overruled the “struggle” and concerns shared during the planning phase with her husband. She did not express her motivation to have a third child as an “unexplainable desire” to Kevin, but rather placed it in the context of planning for another baby. It is not clear how Kevin really felt about the plan, as the quote places Yvonne in the decision making position, with an emphasis on “the third” baby:

14 Chapter 1 We struggled with the decision to have the third baby, as I said before, umm trying to figure out whether it was the best for us, for our two kids that we have now, and this little baby that would be here, and we decided yes with all the deficits like the finances and time, was less than the joy of having that third. So when I found out, as soon as I, we planned it, so I knew when I was ovulating umm, we, I knew how many days it took to figure out whether I was pregnant, I got several tests, I took three of them.

Was it Wise? Dorothy frequently used the word “wiseness” in her responses around the planning to have a baby. Although she was clearly ambivalent about her decision to have a baby, the planning proceeded. “It was a plan, and I’m not sure about the wiseness of the plan at that point.” Dorothy continued to explain that after three years of post-training, she was employed in a hospital-based practice. Due to Derrick’s exchange visa, he had to return to Africa for two years upon the completion of his training. Dorothy never discussed her feelings about the “wiseness” of planning a pregnancy during such uncertain times with her husband. She offered the following as her reasons for dismissing her own ambivalence: Derrick did not “have much luck finding a position that would qualify him to stay here. And umm so anyways like I said the “wiseness” of that in terms of getting pregnant you know I really didn’t. I didn’t have any pregnancies before. I didn’t perceive that I would have any problems, so I thought it’s not really a big deal, even though knowing that he’s not in the country at that time. I mean I was fine with it. I didn’t have any reason to be pessimistic at that point; I mean it’s something we both wanted. You know the fact that he wasn’t there at that time in my mind wasn’t an issue.

“We” Were Ready Freddie’s response changed from speaking in the first person (“I” to “we”) suggesting a shift from a personal decision to the joint planning. She never shared her feelings of guilt and fear in relation to a prior pregnancy termination possibly interfering with conception before this research. She stated, “We were both ready. Yes it was planned.” There appeared to be minimal conversations in relation to pregnancy planning. This observation caused questions related to exactly what is a planned pregnancy, as most of the women seemed to have decided on having or not having a baby prior to joint planning with their spouse, and there were no apparent subsequent substantive conversations around family planning. What did occur, at best, was agreement in relation to the desire to have a baby, although such agreement was not clear in each instance.

Early Stages Explored 15

Unplanned Pregnancies (wanted vs. unwanted) 3 There is a significant amount of research which demonstrates a link between mothers’ attitude toward having a baby (intended vs. unintended pregnancy) to pregnancy outcomes, regardless of socio-economic status. Unwanted pregnancies are associated with less prenatal care and poor birth outcomes. Women with unwanted pregnancies are at least two times less likely to secure early prenatal care within first six-eight weeks.4 Additionally, they are also less likely to recognize that they were pregnant for the first six weeks, and are more likely to have a poor birth outcome.5 In this study, three of the eight women had unplanned pregnancies, and two out of the same three women had unwanted pregnancies (Alana and Tina). Tina, whose pregnancy was unplanned and unwanted, did not recognize she was pregnant for the first six weeks and was seen for prenatal care late in her first trimester; consistent with the research. Alana, whose pregnancy was also unplanned and unwanted, as mentioned, made her first visit to the doctor with the intentions of terminating her pregnancy, prior to discovering she was having twins. Wileta’s pregnancy was unplanned with ambivalence noted and heightened anxiety related to her pregnancy. She sought prenatal care within six to eight weeks.

Feeling Trapped Tina, thirty-three years old, worked as a professional for a mental health clinic, while her husband, Frank age thirty-four, worked as an IT specialist for a major Fortune 500 company. Married for four years their daughter, age three, was born without complications. The major interview took place in her large townhouse in New Jersey, with her husband at work and her daughter out with a relative. Tina described feeling “trapped” when she realized that she was pregnant. Although this study did not measure for depression, Tina shared feelings of sadness, anger, loss of interest, hopelessness, apathy, and constant fatigue prior to her pregnancy. 6 The researcher suspected that Tina was experiencing depression prior to learning that she was pregnant. However, she did not use the word “depression” to describe her state of mind, and she may not have realized that she was depressed:7 I was not planning on having a baby. Actually, I think it was Frank (husband) who asked me “when was the last time I had my period?” He thought I was (pregnant) before I even thought about it. You know we had a three year old and things were not that great with us. I was happy in one sense. I wanted my daughter to have a sister or brother, but I was feeling angry and trapped. I was considering having an abortion. I did not tell anyone. By the time I was seen by the doctor, I was almost three months pregnant. I was so tired and sick most

16 Chapter 1 of the time, I really stopped socializing before I got pregnant, jut not interested, umm I was in a real funk, and then pregnant.

Feeling Devastated Alana, previously mentioned, was in an abusive relationship spanning over ten years. The decision to terminate the pregnancy was painfully set aside when Alana and her husband discovered that she was carrying twins: I had a sonogram, and my doctor said “do you know you are having twins?” I said, ‘twins’ and she said “yeah, are you sure you want to do this?” She (doctor) showed me the screen, which she wasn’t supposed to do. I was upset but just tried to make the adjustments necessary to prepare for the road ahead.

Alana’s adjustment did not bode well for the outcome of her pregnancy, consistent with the research. According to the Family Violence Prevention Fund report (2008) women experiencing abuse in the year prior and during pregnancy were 40-60 percent more likely than non-abused pregnant woman to report a host of medical problems including vaginal bleeding, high blood pressure, and urinary tract infection, and were 37 percent more likely to deliver underweight infants who may not survive.

Unplanned but Wanted Ambivalence Wileta, a thirty-four year Executive Assistant with a Marketing Firm and a mother of a teenage boy, married Clay, age thirty-four, a Musical Director for a mega-church, one year prior to her pregnancy. Wileta had no prior poor birth outcomes, but a pregnancy termination several years before this birth. She was interviewed in her apartment in Manhattan, NY. Wileta described her pregnancy in this way: It was not planned, but wanted. I wasn’t necessarily surprised because we were talking about having a baby. We weren’t necessarily trying, but we weren’t necessarily preventing. I was happy but very anxious.

Wileta’s description is consistent with feelings of ambivalence about becoming pregnant related to significant anxiety about the delivery process that she later shared. Such anxiety is attached to stress responses, further discussed in chapter three.

Early Stages Explored 17

Key Events The women were asked to identify events that were of special significance during the pre-pregnancy and discovery stages of their pregnancies. In most instances, the responses contained difficult issues they faced. For example, an absent husband, a sick family member, the death of a loved one, the prospect of missing out on a big job promotion, was described as significant challenges. The majority of the women (five out of eight) identified and experienced what they considered key events during this early stage of their pregnancy. The key events identified by the majority of women are stress producers, with probable lingering implications throughout the pregnancy, and on pregnancy outcome. 8

Serious Illness Alana who was already dealing with an abusive husband when she learned she was pregnant also faced the serious illness of her mother. It was horrible. I was dealing with an abusive spouse, my mom was severely ill (brain aneurisms) and scheduled for an operation, and I was responsible for my brother, sister, and my son and my daughter while my mom was sick, and I was carrying twins. It was a horrible, horrible time. I don’t know how I got through it all.

In the midst of the difficult issues and events she faced, Alana embarked on a “special” friendship with an independent filmmaker who was working on a documentary titled, “Sustaining Faith during Crises” which featured her mother. The relationship served as a bright spot during a very difficult time for Alana, and she identified this as a key event occurring around the second trimester of her pregnancy: I met him when my mother got sick. My mother had two brain aneurisms. After her first surgery she went to seminary school, and met him there. He has been around and a support to us ever since. Yeah, he was terrific; he’s a documentary filmmaker, and he, he did a documentary on faith and the ending stories where my mother’s story was featured when she got sick. He also included my loss into the documentary. I felt like I was helping others deal with their grief.

Alana was the only women who referred to a positive key event, while simultaneously living through the possible loss of her mother.

18 Chapter 1

Husband’s Absence As mentioned, Dorothy had to deal with her husband’s immigration and work status, which required him to travel back and forth to his home country, West Africa. He was away prior to learning about his wife’s pregnancy. Dorothy explains the sequence of events: This was very uncertain times. There was no exact date at that point for when Derrick would return. And in fact, April was my scheduled due date and he had, because we were married he had to file paperwork. But because of his exchange visa he still had to go back to West Africa first, and so it took like a period of about eighteen months, for this whole immigration thing to take place. So he had an interview date in November, so we figured okay by the time he goes for the interview, he had gotten a job in Nigeria, tell the people there he’s gonna leave blah, blah, blah, he’ll be back by January or February and I’m not due to give birth till April, so that will be fine. But of course that all came undone.

Dorothy delivered her baby during the last week of December and Derrick was not able to return to the United States until several months after.

Relocation and Loss of Loved Ones Both Yvonne and Linda recalled the move of their parents out of state. Yvonne described herself as still “reeling” from the relocation of her parents to Georgia, as they had served as her primary helpers for her two young children. Linda anticipated her mother’s planned move, which she remembered as a source of real disappointment, “I always pictured my mother being right there when I had my children.” Wileta suffered the death of her pastor who was like a family member: My pastor died. I was very close to my pastor and he was sick when I learned I was pregnant, and he died right after the loss my baby. I remember attending the service the next day. I felt sick and weak very sad.

Ill-timed Job Promotion Linda wondered how her pregnancy would effect her application to what she viewed as a great job promotion. She viewed the timing of this opportunity as problematic: I learned around the same time that I learned that I was pregnant that I was up for an important position. I really was not sure how my pregnancy was going to fit into this plan. I was not sure if once folks knew I was expecting I would still be considered a serious candidate. Here was a great opportunity but I was not sure I wanted it, but I did not want to be discounted because I was an expectant mother. I was not sure how I was going to handle the whole situation.

Early Stages Explored 19

The women’s intensity and feeling tone as they recalled these events suggests that they loomed large in the background during the early stages of pregnancy.

Emotional Support Spousal and Family Support A woman’s martial status is another factor examined in LBW and poor birth outcomes, as it may be an indicator of the presence or absence of emotional, social, and financial support during a pregnancy. However, as with other demographic variables, marriage may afford some women more protection than others. The National Vital Statistics Report, 2011 reveals that although marriage improved the IM rates for both white and black babies in 2007, the disparity between the two groups remained approximately the same. Nevertheless, the degree to which a spouse is present and provides emotional support is a protective factor in preventing adverse pregnancy outcomes.9 Five of the women in this study reported feeling supported by their husbands while three did not feel supported. An extended discussion on paternal role during pregnancy occurs in chapter four. Family support is a well-known protective factor in relation to infant mortality.10 In this study seven out eight of the women experienced emotional support from family members (parents, siblings, children), and despite distance had close family ties.

Emotional Support in the Workplace Although there is much literature around pregnancy and the workplace, the focus is on flex schedules, risk management issues and child-care services. Little reveals the workplace as a source of emotional support for the expectant mother. In this study, the work place emerged as a place where important relationships were formed and news of the pregnancy was shared and celebrated. For some of the women their workplace support was in sharp contrast to the support they received from their spouse. The close relationships formed were evident, and in some instances, co-workers served as close confidants. For example, Yvonne shared the news of her pregnancy with a co-worker and friend: I actually told one person at work, so that I could have someone if something went wrong, or I needed to just vent. Umm, I’d have someone to talk to. And you know, she helped me emotionally, she was very happy and thrilled because she knew I wanted to have another child.

20 Chapter 1

Freddie recalled the much-needed support her boss provided during her difficult pregnancy: My boss tried to relieve my concern with being extremely understanding. He told me not to worry about the job during this period, and to do my best and keep him posted. I probably would have lost my job if I worked under someone else.

Linda shared her pregnancy with her close friends at work as she struggled in making a decision about a job promotion. “I had close friends on the job that I was able to confide in during that rough period. They were my trusted sounding boards and advisors.” Overall, the presence and strength of emotional support was not sufficient to mediate the pregnancy outcomes for the women in this study.

Pathway to Maternal Health Issues This chapter introduced each woman entering her pregnancy story from the pre-conception through discovery periods and the major themes which emerged attached to these periods. The findings begin to uncover the beginning sources of issues, which could affect the physical and emotional adaptation to pregnancy. For example, the first theme to surface involved the woman’s personal decision to have a baby prior to planning jointly with her husband. This finding is suspected to be a source of tension between the woman and her spouse, as her personal decision often did not fit into the practical realities of her family’s circumstances. Another important theme involved key events. The majority of the women identified and experienced what they considered to key events during preconception and discovery stages of pregnancy. For the women, such events were significant during this critical time of pregnancy and emotionally taxing. The majority of the women reported feeling supported by family members including their spouses; however several women reported a lack of spousal emotional support. Much of the research demonstrates that spousal emotional support is a protective factor against adverse birth outcomes. In total, this chapter uncovered an imbalance in the lives of the women during this preplanning and discovery stages of pregnancy. Things were outof- kilter: a decision to have a child in light of contradictory facts, an abusive relationship, an absent husband, an unsupportive spouse, feelings of depression, serious family illness, etc. For each woman there were at least two factors present during these early stages of pregnancy, which contributed to an imbalance in their lives creating the conditions for increased susceptibility to

Early Stages Explored 21

maternal health problems, opening a pathway for possible adverse pregnancy outcomes.

Notes 1. Peggy Morton, Perinatal Loss and the Replacement Child (The City University of New York, 1996). 2. Kathryn K. Kost, David J. Landry, Jacqueline E. Darroch, “Predicting Maternal Behaviors during Pregnancy: Does Intention Status Matter?” Family Planning Perspectives 30, no. 2 (1998): 79-88. 3. Often the terms “unplanned pregnancy” and “unintended pregnancy” are used interchangeably. While the two concepts are highly related, in the literature on this topic the term “unintended” refers to a very specific subset of pregnancies: those that were either mistimed (wanted at some point in the future but not at the time of conception) or unwanted (no pregnancy was desired at any time). Unplanned pregnancies tend generally to be unintended, but a small fraction is not. In some cases, those experiencing a pregnancy may not have thought much about its timing or occurrence, or they may hold ambivalent feelings about it that preclude categorizing the pregnancy either as unwanted or mistimed (D’Angelo 2004). In this study the unplanned pregnancies were unwanted. The exception is identified as unplanned but probably wanted. 4. Deanna L. Pagninni and Nancy E. Reichman, “Psychosocial Factors and the Timing of Prenatal Among Women in Jersey’s Health Start Program,” Family Planning Perspectives 32(2000): 60. 5. Kost, et al. “Predicting Maternal Behaviors during Pregnancy,” 88. 6. Nancy K. Grote et al., “A Meta-Analysis of Depression during Pregnancy and the Risk of Preterm Birth, Low Birth Weight, and Intrauterine Growth Restriction,” Arch Gen Psychiatry 67, no.10 (October 2010): 1012-1024. 7. American Psychiatric Association, DSM-IV Manual (Washington, D.C., APA, 2000), 180-187. 8. Marjorie R. Sable, “The Impact of Perceived Stress, Major Life Events and Pregnancy Attitudes on Low Birth Weight,” Family Planning Perspectives 32, no. 6 (winter/2000): 288-294. 9. Pagninni and Reichman, “Psychosocial Factors,” 59-60. 10. Fleda M. Jackson, “Race, Stress and Social Support: Addressing the Crisis in Black Infant Mortality,” Joint Center for Political and Economic Studies (2007): 1-7.

CHAPTER 2

Issues and Outcomes of Prenatal Care: It is Complicated “It would be hard to talk to your doctor about something that you just have a feeling about.” Yvonne It was very bad. Now I know everybody says each pregnancy is different. I only have one pregnancy to compare, well two pregnancies, prior to this one to compare, and for both of my pregnancies I had bad nausea. This one felt, seemed different, so I just said okay this one is different, but the nausea was so severe never vomiting, but just severe nausea. I can’t put a word on it. I said to my mom, ‘you know I just don’t feel right.’ She said, that each pregnancy is different, and I should just keep an eye on it, and you know it would be hard to talk to your doctor about something that you just have a feeling about. When I had my second visit, they did the ultrasound and the baby’s heartbeat was so strong, and he said that the baby looked smaller, so I probably calculated wrong in terms of my cycle. So I thought it is already not growing as much as it should have been, but he said “with that strong heartbeat you know everything is fine.” I don’t remember which week it was. It was sometime after that visit. I started spotting, I mean so small, probably didn’t want to call, but because I just wanted to make sure that they knew (doctor), and that I wasn’t in any danger I called and I spoke to the nurse. She said “you know it’s normal for some women to spot, as long as it doesn’t persist.” Several days lapse and I’m still spotting. Thursday evening, I was a little crampy, and I had a little, yes, still minimal spotting, and little cramping, of

24 Chapter 2 course. I believe I, no I didn’t call, I didn’t call, because umm I did what they recommended before. Rest, elevate my legs, drink plenty of water and that’s what I did, and the cramping stopped. So the next visit I am not experiencing any of the symptoms and everything checks out ok. I feel relieved.

Medical Journey Begins It is interesting that so much about having a baby is not discussed. For example, the “dry run” was the term Dr. Metzger, an OB/GYN who practiced in Manhattan, N.Y. used to explain the panic experienced by some of his patients close to the time of delivery. He recalled the most recent “dry run” experience with a woman who anticipated delivery within days, or maybe hours. She frantically explained first to her husband, in the middle of the night, and then to Dr. Metzger that she could not go through with the delivery. “I can’t do it! I just cannot do it!” He explained that the “dry run” allowed her to release the intense fears attached to delivery. He shared with her that she was not the only person to experience such panic prior to giving birth. Dr. Metzger also pointed out the obvious, “We all enter into our existence through the same process, women giving birth.” There was something comforting in this statement and in learning that she was not the first woman to make what she described, “a fool of myself!” The point is how was she to know that such an experience during pregnancy was common? The experiences shared by the women in this chapter as they entered prenatal care revealed struggles in understanding normal vs. abnormal, what they should share and when, and how much to trust their internal sense vs. doctor’s assessment. Except for Dorothy and April, the other women in this study had no knowledge of BIM as a problem, and therefore viewed their pregnancy issues, including infant loss, as a personal event particular to them, not part of a larger issue. This is an important point as we enter the next pregnancy phase and attempt to understand actions taken, and decisions made by the women. In the last chapter, the findings and discussion focused on thoughts, feelings, events, and circumstances women faced revealing the larger context surrounding conception. In this chapter, the women now faced the need to make critical choices as health and medical issues became the center of concern in caring for self and the well-being of their unborn infant. The research question, which guided the exploration for this chapter, are there factors or issues imbedded in the black middle-class female experience, related to health issues and medical interventions, which could help in understanding the adverse birth outcomes for this target group? Several themes surfaced as the women told their stories in relation to medical issues: reasons for doctor selection, their relationship with their doc-

Issues and Outcomes of Prenatal Care 25

tors, their health concerns, unexpected health issues, familial history, and for some the role of race in the delivery of services. The role of race is prominent in the research as an important factor in explaining the disparity between black and white health outcomes in general, and black and white disparities in the infant mortality rates specifically.1 The role of race, often evidenced in the quality of communication between physician and patient, holds extraordinary importance in the delivery of effective medical care to patients.2 For example, research demonstrates that good communication improves patient outcomes across all medical practices.3 Positive outcomes influenced by communication include emotional health, symptom resolution, and pain control. It also reduces anxiety in patients whose physicians encourage questions, and who encourage their patients to share in the decision-making process. This has special significance in this study, as anxiety not only affects the health of the mother, but also the wellbeing of her fetus. The research strongly suggests that race affects the quality of communication between patient and physician, a consequential factor embedded in the outcomes of medical care.4 While the research is substantial about the cause and effect relationship between communication and improved healthcare results, it also reveals a range of opportunities for missteps in communication to occur. Numerous studies suggest that a patient’s race and ethnicity influences physicians’ beliefs about, and expectations of patients. One reason for the insidious nature of the problem could be that much of physicians’ behaviors are unconscious and unintentional.5 Biases based on racial stereotypes have historical roots and occur automatically without regard to socio-economic status, and are often held by a person who believes that he/she does not endorse racist beliefs. Combine this with the strength of historical biases in relation to gender, as revealed in the current national discourse around the most personal decisions a woman can make in relation to her maternal health, and we see a powerful intersection between race and gender. The fact that such archaic views can re-emerge exposes how resistant such ideas are to change, infiltrate institutions, and the consequences related to health-care disparities are difficult to counter.6 Additionally, firmly held beliefs about risk-behaviors linked to race and gender continues to influence even scientists when confronted with IM disparities and are used as counter arguments in explaining racial disparities in IM rates. The argument, although cannot fully explain population-level differences in IM rates, is a strong one which deserves review and corrected positioning in relation to BIM. To be clear, upon review of major individual risk behaviors, fewer black women than white women smoke (8.4 percent and 13.8 percent respectively), and only 1 percent more black women drink, and 2.6 percent more black women use drugs while pregnant compared to white women. There is a 1 percent difference between pregnant black and white women using a form of

26 Chapter 2

contraception, which protects against Bacterial Vaginosis linked to poor birth outcomes. African-American women who receive prenatal care in the first trimester experience higher rates of infant mortality than white women who do not. In total, such findings suggest that factors other than risk behaviors contribute to poor birth outcomes among black women. This is particularly important to note in a climate that blames black women for an everwider range of social problems. Gates-Williams, et al. (1992) warn of a danger in emphasizing the personal responsibility of African-American pregnant women in a society where “high risk” is synonymous with being African American, and where the failure to meet the needs of women and children becomes a metaphor for poverty and despair. Such warning remains both current and relevant. It is clear that the women in this study understood the real possibility of the intrusion of racial and gender biases in spite of their socio-economic status on their medical care; they made efforts to nullify anticipated issues by selecting a doctor whose race and gender was concordant with their own. However, as I analyzed the findings in this chapter, the role of race became increasingly suspicious, but not obvious to the women. Additionally, there was a bothersome sense that the women’s internal measure for gauging their wellness and illness was not valued by the doctors, consistent with a “just leave everything to me” attitude. Such an attitude places the doctor as the center player, not the woman in her medical care.7 These are some of the issues entangled in the themes discussed in this chapter. The women’s accounts are sometimes expansive, so not to compromise the authenticity of the experiences shared. Their accounts also include other critical data, which provides a sense of the women’s coping style, their personalities, and their thoughts as they encountered a range of health and medical concerns. The first theme speaks to why the women selected their doctors.

Why I Chose My Doctor All of the women in this study had the flexibility and freedom to select from numerous physicians. There was no mention of restrictive insurance plans, or other limitations in relation to securing prenatal care and/or specialized care. In fact, April’s plan provided the option of mid-wives for prenatal care. The majority of the women (six out of eight) in this study selected their doctors based on race and gender. The thoughts behind the selection of a doctor provide some insight into participants’ preference and their expectations in relation to the quality of the communication; the foundation of the relationship.

Issues and Outcomes of Prenatal Care 27

Much of the research on factors linked to patients’ increased level of satisfaction found that among black patients the level of satisfaction with doctors was most linked to being seen by a doctor of the same race. In this study, more than half of the women viewed race as an important factor in increasing their chances of being satisfied as they entered into a patient/doctor relationship. This could also be a differentiating factor for this target group compared to poor black women with limited flexibility in doctor selection, which is the group most studied in relation to BIM. This could explain the high rate of dissatisfaction in relation to pre-natal care expressed by poor black women, with the majority treated by white male physicians. Cooper & Roter (2003) study demonstrated interesting results around patient/physician same race vs. different race communication using pre-visit and post-visit surveys, and audiotape analysis, in sixteen urban primary care practices studying 252 adult patients (142 African-American patients and 110 white patients) receiving care from thirty-one physicians (of whom eighteen were African-American and thirteen were white). Audiotape measures of patient-centeredness; patient ratings of physicians’ participatory decision-making styles, and overall satisfaction were obtained. The findings revealed that the length of visits was shortest among white physicians with African-American patients (13.2 minutes) and longest among AfricanAmerican physicians seeing white patients (18.4 minutes). The average length of visit was generally longer among African-American physicians and African-American patients by 2.15 minutes. Visits with African-American patients were characterized by a higher level of physician’s verbal dominance generally, but was highest among white physicians and AfricanAmerican patients, and lowest among white patients and African-American doctors. Interestingly, patients in race-concordant visits were more satisfied and rated their physicians as more participatory (involving patients in communication and decisions). Audiotape measures of patient-centered communication behaviors did not explain differences in participatory decisionmaking or satisfaction between race-concordant and race-discordant visits. Therefore, researchers concluded that the association between race concordance and higher patient ratings of care is independent of patient-centered communication, suggesting that other factors, such as patient and physician attitudes, may mediate the relationship. One could conclude that patients’ perceptions of the quality of communication were more influenced by raceconcordance with doctor, rather than by the actual degree of patient participation. The statements of the women in this study as to why they selected their doctors, “My new doctor is a black female, and she headed the practice,” “I preferred a black doctor,” reveal that the role of race and gender were perceived by the women as factors contributing positively to the patient/doctor relationship. The women sought a race and/or gender concordant physician relationship.

28 Chapter 2

Yvonne selected an OB/GYN practice attached to a teaching hospital, headed by a black female: Well I’d heard about her, Dr. Moon, through a friend who had problems with you know growths, fibroids, and other problems. She just said, she’s very good and she’s a woman, and she’s a black woman and she really took care of the mental needs and the medical needs. So I went to her because she is black and was recommended, but since she is the top person it was very hard to get an appointment with her. So when I got pregnant, I had to see all of them (doctors attached to the practice). I think my first visit was with umm, not the doctor who delivered my baby but one of the doctors whom I had seen on a regular basis; they were all good doctors. I ended up with the doctor who delivered my last son.

In Freddie’s case, her doctor did not see her until the third appointment: The doctor I had been seeing we didn’t have a relationship. My new doctor was a black female and headed the practice. I wanted to be seen by a black female doctor, but I did not see her until about my third or fourth appointment. The other doctor treating me was a white male.

Although Dorothy clearly wanted a black female doctor, she also expressed the bonus of not having to spend time in the “getting to know you phase,” since she had a collegial relationship with her physician: Yes, I went to a woman who was a colleague of mine and who was also like my mentor. I felt comfortable with her. I did not have to spend time in the getting to know you phase, she is a woman, and she is black. That would be important to me even if I did not know her.

Wileta was clear about her preference: He was my doctor for a long time before this pregnancy. He has a good reputation and I preferred a black doctor. The fact that he was not a female was ok, because I knew him for a long time.

Linda was more concerned about gender than race. Her doctor was as an Indian woman: She was recommended to me by my cousin. I was looking for a female doctor. I went to her because she was a woman. I was new to the area and was hoping that she would continue to be my GYN doctor after the baby was born.

April’s insurance coverage allowed her to be seen by midwives; they were White and Hispanic women. She preferred what she perceived to be the “naturalness” of the approach:

Issues and Outcomes of Prenatal Care 29 I choose two midwives who were part of the insurance that I had at that time with Oxford. I’ve always been called a ‘nature person,’ I’ve always been health conscious. I was twenty when I had my first baby so I didn’t know anything about midwives except through family. So now I’m older and I’m acknowledging midwives and I can understand the naturalness of their approach. I decided on those doctors, under my plan, who happened to be midwives.

Alana held other priorities in her doctor selection. She cited proximity and familiarity: There was actually a hospital right across the street from where I lived, and my oldest was born there so I thought they were pretty good with the first pregnancy so I returned. The same doctor did not always see me, most were white males. It was close and they were always thorough. I trusted them.

Benefits of Choice Ironically, in most instances the physician selected based on race and gender did not assume the medical care for the woman due to the nature of the medical practice. In these instances, there were no complaints expressed by the women and the favorable feelings toward the preferred physician were transferred to the assigned physician. This was probably the result of the women’s option to choose, along with having good experiences with other doctors in the same practice, and perhaps not wanting to change physicians at this point in their pregnancy. Nevertheless, initially women seemed to be looking for an emotional connection with their doctors, starting from a race and gender commonality where they anticipated the communication to feel comfortable. Dorothy, Linda, and April ended up with consistent care provided by the same female doctors with Dorothy having the only black female physician. These are interesting results, which again, did not seem to be an issue of concern for the women.

Patient/Physician Communication It is difficult to address the issue of patient/physician communication without placing both parties in a healthcare framework that suffers the ills of racial disparities, is extremely complicated and by most accounts in need of major reform. A problem from the outset is that the patient/physician communication exists within a context of competing forces, vulnerable patients with

30 Chapter 2

immediate and urgent medical needs, and physicians who must answer to outside authorities with requirements that often are in conflict with patients’ needs (i.e., insurance companies, policies of the institution, etc.). Such forces, in addition to a myriad of other factors, challenge the quality of the communication from the outset. Additionally, patients and providers coming together in a dialogue around health issues bring with them their personality issues, social and cultural perspectives, values, beliefs etc. Within this layered complexity of issues, there is much to get through, including the medical issue(s) at hand. In the case of this particular professional interaction, the physician is the “expert” and is expected to possess the skills that will allow him or her to transcend all these issues, and present a culturally sensitive communication style, where the patient’s care is delivered sensitively, based on assessment and need. However, much of the research findings demonstrate the existence of differences in the quality of medical care, including decisions on medical interventions based on race.8 Van Ryn & Burke (2000) conducted research to understand the role of patients’ race and socioeconomic status on physician’s perceptions and level of care. Researchers surveyed 193 physicians to access their perceptions of 842 patients (57 percent white and 43 percent African-American) following post angiogram hospital visits. Physicians were asked to rate their patients on a variety of personal characteristics including self-control, education level, pleasantness, rationality, independence, and responsibility. In addition, physicians were asked to rate their feelings toward the patient and their perceptions of their patients’ degree of social support, tendencies to exaggerate discomfort, likelihood of drug and alcoholic abuse, and other characteristics. Researchers assessed patients’ fragility/sickness, depressive symptoms, social assertiveness, feelings of self-efficacy, and perceived social support. These variables along with information on physicians’ age, sex, race, and medical specialty were entered into logistic regression analysis to control for the impact of these variables on physicians’ assessment of patients. The results demonstrated that the patients’ race and socioeconomic background do influence physicians’ perception, even when controlling for differences in patients’ socioeconomic status, personality attributes, degree of illness. African-American patients were rated as less intelligent, less educated, more likely to abuse drugs and alcohol, more likely to fail to comply with medical advice, more likely to lack social support and less likely to participate in cardiac rehabilitation. These findings demonstrate that physicians’ diagnostic decisions are influenced by patient’s race, regardless of socioeconomic status. In this study, the majority of the women (seven out of eight) reported having a positive relationship with their primary pre-natal physician and did not perceive race as a factor in the quality of care provided, as was probably the case for the participants in the aforementioned study. It is suspected that the fact that the women in this study had the power, flexibility, and freedom to select their doctor based on what was important to them, reduced the

Issues and Outcomes of Prenatal Care 31

strength of race as a perceived negative factor in the delivery of prenatal care, and on the quality of communication. However, this does not mean that race did not play a role in the delivery of medical care. The women in this study represented a group that suffers poor pregnancy outcomes disproportionately, a fact likely to shape physicians’ attitude in relation to black women and birth outcomes, an issue which became increasingly apparent as the pregnancy experiences unfolded. It is suspected that this fact causes a level of acceptance by physicians who anticipate a certain percentage of failed pregnancies based on race. This in turn affects the manner in which the doctor responds to medical complaints unbeknownst to the women. This form of disparate care is automatic without conscious awareness by the physician, and carried out by white and black physicians as issues related to BIM become accepted pregnancy events with poor options available on effective approaches to prevent or address pre-term births.9 The harm of providing inferior health care services to specific groups has negative results across medical diagnostic categories. The Department of Health and Human Services (2010) reports that compared with the majority populations, U.S. minority populations have shorter overall life expectancies in a list of illnesses that is both long and alarming. The incomplete list includes cardiovascular disease, cancer, birth defects, asthma, diabetes, stroke, cervical cancer, HIV/AIDS, adverse consequences of substance abuse, and sexually transmitted diseases, and infant mortality. The supporting data from the same (2010) report indicates that the overall mortality rates were 25 percent higher for Black Americans than White Americans in 2007. The ageadjusted death rates for the black population exceeded those in the white population by 21 percent for cancer, 48 percent for stroke, 31 percent for heart disease, and 113 percent for diabetes. In the framework of general health care, BIM is one of a substantial number of documented poor medical outcomes associated with race and ethnicity.

Positive Relationships with Physicians Although race and gender initially motivated Yvonne in her physician selection, she formed a relationship with another physician in the same practice headed by the black female physician she sought. I gravitated to this particular guy in the practice, who had delivered my last son. I felt, I was so glad I got the appointment with him. Jon was a breech baby, at 37 weeks and instead, of letting him remain breech and have to do a C section, and he turned him around in my belly. So I really, really felt an attachment to this man, cause he really consoled me, he guided me, he said it’s up to you; these are the pros the cons. Umm and he said I’m probably the best in this practice ever, in this particular procedure. So he was very honest. and I

32 Chapter 2 felt confident with him, so I was very happy he was my OB, although I originally sought the head of the practice, Dr. Moon.

Dorothy had a “good” relationship with her doctor, but was not sure if it served her well when it came to sharing some of her medical symptoms. She was concerned about being viewed as a “complainer:” I had a relationship with her, and I had high level of confidence in her as a doctor, but I am not sure if the fact that I knew her affected my decisions in what I shared, because I’m thinking that basically you don’t want to be a complainer. And this is why people in the field of medicine don’t recommend that you take care of a family member, because you can overcompensate or you could undercompensated. You think well you know Aunt Susie she’s always a complainer, so you minimize the complaint or I’m going do every test on Aunt Susie even though she doesn’t have any complaints.

April was the most enthusiastic about her care provided by mid-wives: Oh I loved them; I loved them immensely. Even after that I was still trying to figure out how to visit them. You know periodically over the years I get a card from them that says don’t forget your pap test and I would cry, like oh my God I love them so much, and I really did we had a wonderful relationship. I saw them exclusively. We had an excellent relationship.

Of the two women who selected their OB/GYN doctors solely on the basis of gender, Linda did not have a positive relationship with her doctor. Linda was the only participant to express negative feelings toward her doctor from the outset. She was recommended to me by my cousin. She was Indian woman who never looked at me when she asked me questions. I don’t think she ever addressed me by my name. I didn’t know if this was a cultural thing or something else. I felt she had made assumptions about who I was, and therefore did not need to get to know me.

Negative Experience with Physicians Attributed to Race There were other negative experiences with physicians, recalled by three of the women, but not until later in their pregnancies. The dissatisfaction attributed to race was in the delivery of specialized and/or emergency medical services during the final phase of pregnancy. Dorothy, Freddie, and Linda pointed to race as playing a role in the quality and sensitivity of care they received during specialized interventions. For two of the women there were no prior interactions with the physicians providing the specialized medical interventions viewed by the women as “critical” to saving their infant. In

Issues and Outcomes of Prenatal Care 33

each instance, the experience was somewhat overshadowed by an agonizing emotional and physical state, as the women were faced with the realization of a probable poor birth outcome. Dorothy was hospitalized as steps were taken to stop the premature birth of her baby. She described her experience in detail as she tried to deal with feelings of not being respected as a physician, and feeling ignored as a patient, which she in part attributed to race while simultaneously coping with the uncertainly of a successful birth: I was now at St. Ann’s as a high-risk patient. After I moved into this new room I started feeling like leaking, and I thought it was a little bit odd, so I’m thinking I broke my water. So I called the nurse I told her, you know I think I might have broken my water. So she asked what happened. So I showed her, there’s like a little puddle of water on the floor. She calls the resident, the resident comes in and does an ultrasound so he’s like no you didn’t break your water, your fluid is fine. So I’m like hmm. So you know my father comes and you know he’s talking, and I can’t really concentrate because every time I laugh and every time I cough I feel leaking coming out. And so I’m like you know this doesn’t make any sense to me but what can I do? Because I’m telling them that something is going on but they don’t think that anything’s going on. And it’s a very surreal feeling, because I’m the type of person I’m very in-tune with my body so I know, I know when something is different. So eventually, the nurses change shifts and a new nurse comes in, and my dad leaves. And she’s like what’s the matter you don’t look happy, and I said I’m not! Every time I cough, every time I laugh, and now for some reason I’m having the hiccups. I never have hiccups but this particular day I’m having hiccups, hiccups, hiccups and every time I hiccup I feel this leaking. Every time I laugh, every time I cough I’m feeling this leaking. And I said you know the resident came and he said my fluid is fine. So she looked at the pad and saw that it was soaking wet, and she said not to be gross, but I’m gonna smell and it smells like amniotic fluid. I said, ‘I know my body and I’m not urinating on myself.’ So she was like okay let me call, let me call the doctor. So the same resident comes back, does another scan. Now I don’t have any fluid. So he’s like oh well I guess you did rupture. So now he calls my doctor, and then he comes and he’s like you know well you know you’re twenty-four weeks and three days so we gotta take out the stitch blah, blah, blah. People don’t think that it makes a difference, people will pre-judge you. Yes, my doctor knew that I was a doctor but he didn’t go and so okay announce to everybody this girl that is in room so-and-so and so-and-so is a physician, is actually an OB/GYN, which is fine with me, because I’m not the type of person. I’m not looking for the red carpet to be rolled out. But there’s also a certain expectation on my part, on how I expect to be treated and how I’m gonna be treated. So you know, when he comes in the room and he’s like oh you know, I’m gonna do an ultrasound, and I’m like okay but I don’t know who you are, I know he’s a resident. He’s not my doctor, but do I know his name, do I know what year resident he is, did he say hello I heard you have a prob-

34 Chapter 2 lem. I wasn’t trying to let him, I wasn’t trying to tell him okay you need to check me and see what’s going on, I wasn’t really trying to deal with him. He was Asian. I am sure race played a role in how he was dealing with me.

Dorothy’s experiences with perceived racism were so imbedded in her long account that the meaning of her words was not fully understood until transcribed. In talking about her treatment at the hospital, I took note that it was difficult for her to admit that race probably played a role. It was as if to admit to race as an issue, was in some way acknowledging that she was worthy of the poor treatment she received. Roberts (2000) suggests that silence about inferior treatment might be a means of resistance against feelings of oppression. Crosby (1984) talks about the need for blacks to believe in a just world and the fairness of others to avoid feeling vulnerable and powerlessness. It would be particularly important for the women in this target group to maintain a sense of power, and not seen as vulnerable. Their status makes contacts with white authority prevalent with more to risk. Viewed as powerless or vulnerable could have serious consequences. However, the well-documented link between racism and poor pregnancy outcomes exists regardless of how the women chose to reveal their feelings or encounters with racism, as it does not obviate its influence and affects on one’s health. Such feelings still reside in the psyche with physiological consequences.10 In the case of Freddie; her medical ordeal was exasperated by feeling that she was poorly treated, “probably because I am black” We were sitting in the ER for two hours. I had been given instructions to have ER call my MD’s offices and we did that and assumed that they were taking care of that. By this time my husband was pacing, then yelling, then screaming for me to be seen. It was hell, the worst day of my life! Finally a doctor came in and asked some questions, and coldly told me that the baby had to be delivered. I was very upset and did not want this doctor to examine me. How could he say this without even examining me? By this time my mother had arrived and I felt better having her around. We wrote to the hospital about our ordeal. I just don’t feel that I would have been treated by that doctor, resident, whatever he was, that way if we were white.

As mentioned, unlike the other women in the study Linda did not have positive feelings toward her primary physician from the outset. She shared feeling detached from her doctor during her first appointment, and such feelings were validated by the manner in which she felt treated by her physician during her emergency. Either she didn’t assess the urgency of the problem when I called her to tell her that I was experiencing cramps, or she gave me her routine response. The way I was treated confirmed what I sensed from the beginning. I think it would have been different, you know, if I were not black. I always felt that she had drawn conclusions about who I was. She instructed me to take milk of magne-

Issues and Outcomes of Prenatal Care 35 sia and to lay on my right side, which I found out later, was the worst thing I could have done

Linda’s account echoes a common sentiment expressed by many black women, who feel that embedded in their medical care is the issue of race with real consequences. In fact, we know that the women in this study held a similar view, and therefore, as discussed, took preventative steps to reduce the likelihood of race playing a significant role in their patient/doctor relationship.

Warning Signs: Probable Precursors to Poor Pregnancy Outcomes As the women’s pregnancies progressed, and following the initial prenatal care visit, the next communication with their doctors was in relation to troublesome symptoms. The overwhelming majority of the women (seven out of eight) reported having one to two symptoms, throughout their pregnancy, and for most were severe enough to consistently interfere with their daily activities. The majority of the women used words such as “severe,” or “much different from other pregnancies,” to emphasize the fact that what they were experiencing was in their view serious. In this discussion, such medical symptoms are called warning signs, which were probably precursors to adverse pregnancy outcomes. The intensity and similarity of the warning signs were striking, which included spotting (lasting intermittently), extreme nausea and fatigue. Of the seven women who reported warning signs, Yvonne, Tina, Wileta, and Linda reported having a “feeling” during the entire pregnancy that “something was wrong.” These four women all had prior successful pregnancies. Additionally, three other women, Alana, Dorothy, and Freddie stated that they had weight issues prior to conception and throughout their pregnancies. Dorothy and Alana reported that they were at least 25 lbs overweight, while Freddie reported being 20 lbs underweight prior to conception, but none of the women received any special instructions from their doctors. The doctors’ lack of intervention may reflect findings revealed by Marshall & Janz (1990) research on doctors’ attitudes toward prevention. They concluded: Black women who are seen early for prenatal care may face doctors who are ill prepared to hold substantive conversations around behavior or other health-related changes to ensure a positive birth outcome” In this study Wileta was the only woman whose doctor ordered specialized testing, in her case an amniocentesis, which underscores this conclusion.

36 Chapter 2

Warning Signs Recalled The women’s accounts in this section include medical responses to their complaints to provide a fuller description of the incidents. The initial medical responses for seven of the women included checking the fetus’ heartbeat and offering reassurance that all was “fine” or “OK.” Only one test was ordered, as mentioned, and Alana was the only woman whose doctor introduced changes to her daily routine in her second trimester. Linda was monitored on a monthly basis by a hematologist. Other more aggressive interventions were introduced only weeks prior to infant loss.

Severe “Morning Sickness” Alana pregnant with twins described her pregnancy as “harder” and experienced severe morning sickness throughout the day. It is also interesting to note that Alana did not reveal her abusive relationship with her husband to her doctors, “Because they never asked.” This reveals a missed opportunity by her doctor to learn more about the psychosocial issues surrounding this mother. This missed opportunity is especially disconcerting in light of the other issues impinging on Alana’s life while pregnant, and the fact that domestic violence is considered a modifiable risk factor for LBW births. 11 I had morning sickness in the morning, the afternoon and at night. Physically it was harder, you can’t walk as far and you can’t stand as long, and the morning sickness was doubled. It was not like my other pregnancies. My sickness was severe and lasted much longer. I didn’t eat as I should have because I had no appetite during this period. I went to the doctor two months after the appointment when I learned I was having twins and I was told to stop working because I was carrying low. I was at this point I think in my second trimester. I was placed on restrictions. No lifting, not a lot of walking, not too much, umm, just limited activity because it was still early, but you know just told not to overdo what I was doing.

Freddie started spotting one month into her pregnancy and felt “very, very sick” throughout: I was very, very sick. I. could not hold anything down. Everyday I was sick. I would try remedies including the Sea Bands; nothing worked. It seemed that I started getting sick shortly after I was pregnant, and it did not stop until a few days before the baby came. I started spotting one month into the pregnancy. I thought, ‘Oh my God, what’s wrong.’ I went to the doctor immediately, and doctor said everything was OK and this sometimes happens [spotting]. I should not be concerned as long as it is not heavy bleeding. He did all kinds of blood test, including HIV but everything came back negative. We heard the heartbeat of the baby and I felt better. The doctor advised me to take it easy, but everything was OK.

Issues and Outcomes of Prenatal Care 37

Tina also stated, “this pregnancy was not like the first,” and she was worried about her ability to function: I wasn’t even sure if I could continue to work. This pregnancy was not like the first. I was sick all of the time. Nausea, headaches, and dizziness. This was not at all like my first pregnancy. I could only eat those things that didn’t turn my stomach and it was beginning to feel like everything was making me ill. I started spotting around the fifth month and immediately went in to see my doctor. Yes, he took tests and examined me. I have a good doctor and whenever I called or needed to see him he was always there. He reassured me that this pregnancy was “different.” All the tests were negative. He asked me if I was under stress. At that point I was actually feeling less stress than I felt when I first learned I was pregnant. He told me to take it easy; this was not uncommon (spotting). He prescribed vitamins.

Nagging Feeling Linda was one of the four women who had a nagging feeling that something was wrong: I did not have any concerns for the first three months, but later I felt very tired all of the time and just different. I had a nagging feeling that I tried to explain away as anxiety. It is hard to put into words, but I just felt that something was wrong. For on thing, after my third month I had to inform the job because I had expanded so quickly. I really could not understand how I was going to make it to nine months, I was getting so big. Everything was always “fine” even when she referred me to the hematologist to “keep an eye on my clotting factor.” He (the specialist) assured me that everything was fine. I was scheduled to see him monthly for monitoring. That scared me, but he kept saying that everything looked fine.

Wileta, whose pregnancy was unplanned but probably wanted, knew “something was wrong” in her first trimester: Not long after I confirmed that I was pregnant, there were issues because I was spotting. I knew something was wrong. It was not anything like my first pregnancy. He (doctor) didn’t sound concerned but I remember that he wanted me to have an amniocentesis. The next visit, it was closer to my fifth month I was supposed to take this exam, because my spotting never stopped. He said well you need to go take this test.

As Wileta continued to explain why she did not have the medical exam; it seemed connected to her anxiety and ambivalence in relation to her pregnancy, consistent with her expressed feelings at the time of discovery, “We weren’t necessarily trying, but we weren’t necessarily preventing.”

38 Chapter 2 Umm no, I did not, because there was a miscommunication. I thought he was telling me when to go, and I was waiting for an appointment, but in actuality, I was supposed to call myself and make the appointment, and I didn’t; somehow we did not understand each other’s communication.

Feeling Pressure Dorothy attributed her symptoms to having to stand for long periods: Because we had to do many surgeries I started to notice that when I would stand up for a long time I would feel a lot of discomfort. I just attributed it to standing up for a long period of time. I started to compensate by sitting down during surgeries, so I would have the stool there, so I would stand up, sit down, stand up, sit down, and stand up sit down. Just like a pressure type of feeling, particularly when I stood for a long time. But it happened more so in the O.R. not so, because working on labor and delivery it’s not like you’re constantly standing; you’re sitting and you get up, then you’re sitting and you get up. So I didn’t have that kind of problem, but when you’re standing in the O.R. for a long time, that’s when I start to feel like you know pressure. So that’s how I compensated; I compensated by sitting down from time to time. And this was probably about four and a half months, so I was around seventeen or eighteen weeks when this started. I did not tell my doctor because I did not think it was anything other than tiredness from standing. Because I’m thinking that basically you don’t want to be a complainer, you’ve seen a hundred thousand women who come in and they’re all it’s this pain, it’s that pain, it’s whatever. And quite honestly I didn’t perceive it, as a problem because I figured this is just how it is; I had never been pregnant before. And so I noticed that I was having this intermittent kind of problem. It was about seventeen, eighteen weeks, she (doctor) happened to be in the hospital and I had just come out of the operating room and I was holding up my stomach, because it just feels better when I hold up my stomach. And she’s like what are you doing? And I said well I don’t know it just feels better when I do that. And she’s like well why? What do you mean it feels better, are you having a problem, are you having pain? I said no, every now and then I just feel a lot of pressure when I stand up for a long time. And she’s like well do you have this, do you have that? And I’m like no; no I don’t have any bleeding, no spotting, nothing. So she’s like well I’m want you to go home and stay off your feet, I’m gonna get you an ultrasound. And I’m like I don’t need to stay off my feet, I’m fine, I’ve been doing this it’s not a big deal, so she insisted on that. ‘I want to play it on the safe.’

The medical response to Dorothy’s warning signs eventually culminated in her being transferred to a physician specializing in high-risk patients and two different hospitals in an attempt to stop the infant’s premature birth after she was placed on bed rest for one week: So I went back a week later (after bed rest). Right, I’m like between nineteen and twenty weeks. So they put me on my head, I stayed in the hospital, they

Issues and Outcomes of Prenatal Care 39 put me on all these medicines to relax the uterus and you know okay fine. I’m in the hospital. My cervix is getting shorter, and so the high- risk doctor comes back again and says here are your options, take it out whatever happens, happens, we could try and put in another stitch, you could break you’re water this and that could happen, blah, blah, blah. So now I was admitted into a hospital that only had a certain level of nursery that would not be able to take care of if I had a premature baby. So he transferred me to another hospital.

Dorothy received progressively aggressive medical interventions starting from around twenty-two weeks of her pregnancy aimed at stopping pre-term birth. She was the only woman given a diagnosis, related to a short-cervix, near the end of her pregnancy, which she explained by then was too late to reverse the premature birth.12

Body’s Internal Alarm System I considered that the level of comfort the majority of the women experienced with their physicians might have skewed their assessment of the actual quality of medical care they were receiving. There was a lack of situational awareness, a tendency to accept doctor’s explanations to their medical complaints despite how they were feeling and what they were sensing. In examining the consistency of complaints made by the overwhelming majority of women on warning signs (with very similar language used by all), and the responses of their doctors (with very similar language used by all), and the kinds of medical interventions applied, there seemed to be a repetitious interplay between patient and physician around women’s medical complaints with somewhat scripted medical responses and no good results. It is interesting that, for the most part, the women maintained a trust in their doctor’s judgment, even leading to temporary periods of reduced anxiety in relation to the medical symptoms they were experiencing, because the doctor assured them that, “everything is fine,” or “all is OK.” Dorothy shared an interesting observation in her role as a physician, as she reflected on the medical care during her hospitalization: I think that to a certain degree for various reasons people put a lot of credence into their doctor. Well the doctor said everything is fine so it must be fine, well the doctor said so, so it is, and in that happening it gives them [MDs] the ego to feel like, I said there’s nothing wrong with you, so there’s nothing wrong with you.

This observation reflects an almost tacit agreement between patient and doctor on the traditional roles, which frame this professional relationship; I talk, you listen. The doctors may possess an attitude of authority, part of

40 Chapter 2

their professional culture, making it difficult for the patients to question the information provided. Here a physician culture is revealed, not consistent with the needs of the patient There is something even more troubling about warning signs. Warning signs were the first indicators that something was not right; the women believed that, the body’s alarm system was working fine. This means that the women had to turn off their body’s warning system to accept medical assessment and advice. The implications these kinds of experiences have on a black woman’s psyche when considering a subsequent pregnancy, or when entering into future relationships with physicians are troubling. More importantly, the self-doubt this creates in trusting one’s ability to measure one’s state of wellness creates a dangerous depowering path for women in relation to health issues.

Family History and BIM The majority of the women (six out of eight) shared a family history, both maternal and paternal, of infant loss, and/or or premature births. Chapter 4 will include discussion on paternal familial history and its link with adverse pregnancy outcomes. Dorothy’s account below is illustrative of the findings in relation to maternal family history: The other interesting thing is that, my mother actually had several pre-term births that I knew about but, My mother had three kids me being the oldest, and then my immediate brother is about a year younger than me, and we knew he was premature. My mother being a lay person and not a medical person she would say she was about seven months at the time, at that time it was (1971) and they basically just told her go home forget about her baby because he’s probably gonna die. And then at that time you know things were completely different, she wasn’t allowed to go in and see him, you know she could see him from a window, but that was basically as close as they could get. And then three months later they gave her, her baby and said okay, you know, go home.

Although research demonstrates that a black woman with a previous LBW infant is almost four times more likely to give birth to another LBW infant than a woman who had no history of LBW infant births, such findings did not bear out in this study.13 Only one of the women with a prior pregnancy reported a premature birth, Alana. In her case, the infant was born about three to four weeks early. However, most of the women reported their mothers having a LBW infant and/or experiencing infant loss.

Issues and Outcomes of Prenatal Care 41

Complicated Outcomes This chapter presented findings as I explored those factors and issues imbedded in the pregnancy experience related to patient/doctor relationships, health issues, and medical interventions. The previous chapter revealed an imbalance in the lives of the women during their pre-conception and discovery stages of pregnancy. Things were out-of-kilter as numerous factors impinged on their pregnancies. Such factors combined with the findings in this chapter present an increasingly complex picture. An important insight uncovered in this chapter relates to the routine treatment and deficient communication by the doctors in relation to medical complaints, which may reveal inadequate information on diagnosis and treatment to prevent preterm labor. The warning signs were precursors to trouble and probably a signal for the necessity of more than routine tests. There seemed to be missed opportunities by the doctors to make in-depth inquiries and request specialty testing to rule-out existing medical problems. As mentioned, Wileta was the only woman referred for an amniocentesis. The other specialty high-risk services rendered to Alana and Dorothy only weeks before their loss, if provided sooner could have resulted in specific restrictions, and/or other interventions perhaps resulting in better birth-outcomes. Additionally, I suspect that race played a role on two levels: First, in the form of possible biases held by the physicians toward their patients, affecting the quality of services, including communication. Although most of the women sought doctors based on race, we know that the eventual doctor/patient relationships assumed the usual, white physician/black patient, containing issues discussed. Second, the frequency of pregnancy losses by black women likely influenced the attitudes and expectations of doctors toward their black patients, a consequence regardless of the race of the physician. Moreover, if we place BIM and pre-term births in a broader context of the field of obstetrics, we would see a medical specialty facing problems related to research, training, and in attracting new physicians. Unfortunately, such problems are not receiving much attention. However, the women seemed to practice a blind faith in their physicians, needing to have them fit into the model which first motivated their selection; a comfortable relationship void of issues attached to race. Therefore, the women were unaware of these issues, although such issues are implicated in their pregnancy outcomes.

42 Chapter 2

Notes 1. Cheryl L. Giscombe and Marci Lobel, “Explaining Disproportionately High Rates of Adverse Birth Outcomes among African Americans: The Impact of Stress, Racism, and Related Factors in Pregnancy, “Psychological Bulletin 131, no. 5 (2005): 662–683. 2. Jerry Cromwell, et al., “Race/Ethnic Disparities in Utilization of Lifesaving Technologies by Medicare Ischemic Heart Disease Beneficiaries,” Medical Care 43, no. 4 (April 2005): 330-337. 3. John M. Travaline and D’Alonzo P. Ruchinskas, “Patient-Physician Communication: Why and How,” Journal of American Osteopathic Association 105, no. 1 (January 2005): 13-18. 4. Michelle Van Ryn and J. Burke, “The Effect of Patient Race and SocioEconomic Status on Physician’s Perception of Patient,” Social Science and Medicine 50, no. 6 (2000): 813-828. 5. Jessie Allen, “A Remedy for Unthinking Discrimination,” Brooklyn Law Review 61 (Winter 1995): 1299-1345. 6. David D. Williams, and Toni D. Rucker, “Understanding and Addressing Racial Disparities in Health Care,” Health Care Financing Review 21, no. 4 (Summer 2000): 75-90. 7. John Robbins, Reclaiming Our Health (Tiburon, CA, HJ Kramer, 1998), 3557. 8. Lisa P. Cooper and Debra D. Roter, “Patient-Provider Communication: The Effects of Ethnicity on Process and Outcomes of Health Care,” Institute of Medicine Report 2003, http://www.nap.edu/openbook.php?record_id=12875&page=552 (accessed January 2009). 9. Vetta L. Thompson, “Perceived Experiences of Racism as Stressful Life Events,” Community Mental Health Journal 32, no.3 (June, 1996): 223-232. 10. Wendy M.Troxel and Karen A. Matthews, “Chronic Stress Burden, Discrimination, and Sub-Clinical Carotid Artery Disease in African -American and Caucasian Women,” Health Psychology 22, no. 3 (2003): 300–309. 11. Yasmen Neggers and Robert L. Goldenberg, “Effects of Domestic Violence on Preterm Birth and Low Birth Weight,” Acta Obstetricia et Gynecologica Scandinavian 83, no. 5 (2004): 455-460. 12. Jay D. Iams et al., “The Length of the Cervix and the Risk of Spontaneous Premature Delivery,” New England Journal of Medicine 334, no. 9 (February 1996): 567-572. 13. Richard E. Behrman and Adrienne S. Butler, “Preterm Birth: Causes, Consequences and Prevention,” Board on Health Science Policy Report 2007, http://books.nap.edu/catalog.php?record_id=11622 (accessed February 2009).

CHAPTER 3

Women’s Experience with Stress: Dangerous Burdens “I was just presenting the perky me until the baby dropped.” It was in the family room in Carla’s home located in a Chicago suburb where we gathered. Six black professional women, a focus group for the research pilot (unpublished) for this study. Carla, a thirty-three year old Black-American female, spontaneously responded to the description of the research on Black Infant Mortality and captured the complete attention of her audience with a communication style befitting a successful news anchor. As she shared part of her pregnancy story it was clear that she was reliving the events going through the motions with her body with matching facial expressions. She managed to transport the group of listeners to the time and space of her account. Her voice tone increasingly revealed indignation, and the air of self-confidence conveyed provided a curious contrast to her cautious and tentative explanation of her acceptance of events prior to her “awakening.” Carla worked daily on the afternoon and late evening News, and then rushed to catch the last train home more than two hours away by car, always with little time to spare. She imparted what she described as an “awakening” on carrying out business as usual to the group, while being almost eight months pregnant. On this particular Friday evening, her boss insisted that she work on a “special” assignment. What was always present in her thoughts was the reality that if she did not make it on time for her train it would mean having to spend another night alone, separated from her family.

Carla Ok, so it was Friday and I couldn’t miss my train. That happened several times before, and I was determined not to miss my train. If I missed my train I would have to get up early enough to catch a train so that I could be home Saturday morning. We were trying to keep certain traditions going with my busy sched-

44 Chapter 3 ule and I made a commitment to myself to make the traditional Saturday morning breakfast each week. As I ran from the office I was angry, feeling really pissed off, but I had to catch that train on time. I had finally reached the platform and with a laptop in one hand, a briefcase and handbag in the other, I sped toward the doors, which were just about to close, and I leaped inside the train like some crazed woman. I remember falling into my seat trying to catch my breath and thinking, ‘what in the hell did I just do!’ At that moment, I decided that I was going to demand car service. Here I was working for the this network for almost five years, on the main NEWS twice a day and it had not occurred to me until then, at almost eight months pregnant, to ask for what should have been offered. I felt really stupid and angry. The thought to ask for car service just never occurred to me. If I were white, I probably would have kicked off my shoes (she is going through the motions as she is talking and places her bear feet on the end of the sofa, leaning back in her chair) and put my feet up, with an attitude of ‘ok,’ things are now going to be different around here. I am not in my usual state, and I require a little bit more care. Instead, I was just presenting the perky me until the baby dropped.

One of the women finally asked what was on everyone’s mind, “Why do you think it did not occur to you to ask for car service earlier?” Carla simply stated, “I don’t know.”

Stress and Maternal Health The purpose of this chapter is to gain a deeper understanding into the women’s experiences with stress, the sources of stress, their perspective on stress, and their coping styles related to stress. Sapolsky’s (1998) description of stress provides a framework for the women’s accounts and discussion in this chapter: “Stress is a complex phenomenon that encompasses exposure to psychosocial, environmental, and physical changes and the body’s responses to those experiences.” The research question guiding this part of the discussion, are there unique experiences with stress, which offer some understanding for the poor birth outcomes for the eight women in this study? The answer to this question holds implications for understanding the BIM phenomena for other black women, but it is important to state from the outset, that life stressors include situations which occur across all sociodemographic groups of all races. However; for people of color, and for the women in this study, there must be value given to the vast amount of research, which links stress to the unique person-environment transactions involving race, which for African-American women is a dissimilar experience from their white counterparts.1 The viewing of the BIM phenomenon through a different prism is required. As suggested by Dr. Michael Lu

Women’s Experience with Stress 45

(2008), UCLA obstetrician and gynecologist having worked on the front lines for decades, “For many women of color, racism over a life time, not just during the nine months of pregnancy, increases the risk of preterm delivery.” To improve birth outcomes, Lu argues, we must address the cumulative wear and tear on the body’s capacity to handle such stress loads, that affect women’s health not just when she becomes pregnant but from childhood, adolescence and into adulthood. Additionally, African-American women are confronted with particular stressors that emerge from the simultaneous experiences of race and gender, which makes them especially vulnerable to elevated levels of stress and health risks. Root (1992) suggests that, “Many women of color are leading middle-class lives, thus apparent economic barriers are not as formidable, the others remain; social and institution barriers remain astonishingly similar, founded again in the intersection of subordination of the female gender by race.” The recognition of such factors provides a foundation on which all other stressors rest. In other words, black women start with stress parameters beyond the level of generic stress, illuminated by words of the women who reveal unique experiences rooted in a racial history of enslavement. We are hearing from women several generations away from the scene of the crime, but still influenced by and still using coping styles passed down through generations designed to counteract past racial stereotypes, especially related to pregnant black women.2 This fact combined with other negative factors helps the reader gain a fuller understanding of the cumulative factors almost certainly linked to infant loss for the women in this study. However, there are other concepts which add to the understanding of stress relevant to the experiences of the women in this study and other blackwomen born in America. First, it is important to understand why there is such an emphasis on stress: Stress and its link to preterm births and failed black infant births, may be one of the most significant differentiating factors in the disparity between black and white infant mortality rates. The research demonstrating a connection between stress and adverse birth-outcomes is significant.3 Researchers are convinced that everyday exposure to racism puts one’s body on alert, similar to a stress response, but in this case the stress response is turned on for a lifetime, which takes a toll on the body. This theory addresses the question of why Black-American women may be more susceptible to maternal stress with higher rates of poor birth outcomes. This study provides an opportunity to understand stress on an individual level as experienced by the women in this study, in addition to sources of stress and the coping mechanisms they employed. Theories described in the sections below explain the mechanics of stress and places stress in useful frameworks for examination.

46 Chapter 3

Stress Related Theories Allostasis Allostasis is the body’s ability to maintain homeostasis and adapt to acutely stressful events. This internal adaptive response is challenged in situations of chronic or frequent stress, and when there is an excessive demand on the body’s regulatory systems.4 Allostatic load describes comprehensive and cumulative risks across multiple physiological regulatory systems resulting from chronic exposure to life challenges or stressors that influence health outcomes across the life span. In other words, allostasis refers to the equilibrium mechanism (ability to adapt to stress), which lessens chances of reaching a tipping point, resulting in adverse health outcomes, while allostatic load refers to the physiological capacity (load) to handle stress.5 Alana’s account of the stressors in her life during her pregnancy, which were persistent and cumulative, provides an illustration: I was dealing with a difficult pregnancy with twins, on restrictions, not being able to work, a ten year abusive relationship with my husband. My mother was also severely ill at the time, and I was responsible for my brother, sister, and my son and my daughter while my mom was sick. My sister was around eight and my brother was around fourteen or fifteen.

She later encountered an event (discussed in chapter 5) which taxed her physiological capacity sufficiently to trigger a breaking point associated with her poor birth outcome.

Weathering A complementary construct is the theory of “weathering.” This too provides an explanation for potentially greater susceptibility to stress among African-American women compared to white women. The “weathering” construct suggests that black women experience deterioration in health because of “the cumulative impact of repeated experience with social, economic, or political exclusion.” 6 It is the slow and steady erosion on one’s physiological and psychological wellbeing. For example, although Dorothy had reached a high level of professional success, several of her accounts reveal that there were significant physiological costs attached to her success. Her response to the repeated experience of exclusion offers some explanation as to her stubbornness when it came to objectively assessing her warning signs. “You always have to be able to do it for yourself,” a coping style, which made it difficult for her to see herself needing help. These theories (allostatic load and weathering) speak to the internalization of cumulative and/or chronic exposure to stress presented by layers of social inequities and when combined with life’s other daily stressors can have dire consequences.

Women’s Experience with Stress 47

Epigenetics What if BIM phenomenon could largely be explained by the dynamic interaction between genetic behavior and its direct contact with environmental forces? Epigenetics is the study of heritable changes in gene activity that are not due to changes in DNA sequence. The theory holds that such changes or early gene “programming” occur due to the sensitivity of the fetus to hormones and other chemicals in mother’s bloodstream. Prolonged exposure to hormones such as cortisol (stress hormone) effects gene expression and is passed on from one generation to the next, affecting Mom, her children, and her children’s children. When a pregnant woman is experiencing on-going stress she is immersing her fetus in the stress hormone.7 This theory posits that the immune system can be adversely affected by certain experiences and exposures, such as repeated infections or undue stress. These exposures may pattern the immune system in a particular way that sets the stage for increased risk for poor health and poor birth outcomes. Epigenetics offers an explanation for the stable alterations in gene expression brought about by some random change or any environmental influence. Throughout this study the powerful role of a racial history, and similarities in the personal family health histories (the overwhelming majority of the women and men had a familial history of poor infant outcomes) were evidenced. We know that prenatal stress can lead to impaired fetal growth and preterm birth. If we were to apply the theory of epigenetics in examining the effects of the historical traumatic stressful events experienced by black women and men uprooted, captured and enslaved, we might conclude that what we are seeing in the persistent disparities in poor birth outcomes for black women in America may stem from an imprint left on the immune system caused by such events. Epigenetics is the one theory that could help to explain why BIM occurs across socio-economic lines in the black community, and why this phenomenon has not responded to efforts to redress. Perhaps some reframing and rethinking of the problem is needed. Nevertheless, this theory does not devalue the results of research demonstrating the link between racism and stress responses, but provides an explanation of how the early life interaction with environment has widespread consequences for later health problems; the origin of health problems.

48 Chapter 3

History, Culture, and Race: Contextual Framing of Stress An important question that emerges from a discussion on stress as it relates to black women and maternal health is, to what degree have America’s history and the Black-American woman’s experience therein shaped her perception of self; and with what consequences?

A Racial History and Coping Responses There are beliefs, behaviors, attitudes, and coping styles linked to the black woman’s racial history in America that have gradually become, in varying degrees, the custody of the black woman’s sense of self.8 In addition to the internal physiological consequences of racism, such coping styles have emerged in the service of dealing with experiences of racism, albeit not always effectively. For example, the ability to “stand up to the rigors of work,” regardless of physical frailties is a common theme of black professional women, traced to historical negative attitudes about black women especially in relation to motherhood. Except for the initial ceremonies bestowed upon a black mother during the announcement phase of her pregnancy, what normally follows is business as usual, and needing to be viewed as able to carry out business as usual. Characterizations such as the strong maternal workhorse “Mammy,” which dominates even contemporary representations of black women have affected the black women’s perception of self in complicated ways. Add to these historical beliefs of what childbearing for black women represented; economic gain, an underlying view still evident in many of today’s stereotypes.9 We can hear the enduring weight of history in Carla’s account which opened this chapter. Her words encapsulate the experiences of all of the women in this study as they struggled to deal with stressors linked to history, family, daily responsibilities while maintaining the status attached to their various roles: professional, mother, wife, etc. Carla’s account also reveals themes linked to self-expectation and self-worth as she struggled to perform in a business as usual manner, while pregnant. The experience of racism, which Carla alludes to in her account is not presented as an experience involving a direct affront, which is consistent with how most of the women in this study also raised the issue of race, but rather an experience which daily permeated her reality (weathering). Many of these women probably did not talk about such encounters, as they were experiences which seeped into their daily realities. It is important to highlight the fact that during the course of a lifetime one may be fortunate enough to escape the direct victimization of racism, however, the fact that

Women’s Experience with Stress 49

there is the distinct possibility that because of one’s race it could occur at any time creates stress above the “generic stress” of life.10 For example, in studying the effects of sexism and racism, Krieger (1990) discovered that African-American respondents were 5.9 times more likely than white respondents to keep quiet and accept unfair treatment in the course of daily activities (at school, work, getting a job, getting medical care). Additionally African-American women who said they accepted unfair treatment without complaining were 4.4 times more likely to report having high blood pressure than those who talked to others or responded to being treated unfairly. The effects of racism on a pregnancy is underscored by Mustillo’s (2004) research which examined the presence of racism as a stressor and its link with poor pregnancy outcomes on 352 self-reported experiences of racial discrimination on Black–White differences in preterm less than (37 weeks gestation) and LBW (less than 2500 g) deliveries. Among black women, 55 percent of those with preterm deliveries and 61 percent of those with lowbirth weight infants reported having experienced racial discrimination in at least three situations while pregnant. Among white women, the corresponding percentages were 5 percent and 0 percent. Researchers concluded that self-reported experiences of racial discrimination were associated with preterm and low-birth weight deliveries, and such experiences may contribute to Black-White disparities in IM outcomes. The picture is more complicated by what the women in this study took on due to self-expectation. For example, Carla’s need to present herself as being able to conduct business as usual, “I was just presenting the perky me until the baby dropped,” regardless of the challenges posed by her pregnancy and her life’s circumstances, speaks to a level of self-expectation that is stressful to maintain, with real consequences. This business as usual stance was a prominent theme in this research and with black women in general, with the women in this study referencing history and culture as its source.11 In Carla’s case, due to prior complications, likely the consequence of stress, her delivery was by C-section. However, there was no escaping additional health costs related to stress. It seemed like a whirlwind of events surrounded Carla for several years of her professional life. Perhaps if her body had time to recover before being thrust into big city news and politics, the outcome would have been different. It was not until sometime later that she confessed that she was not happy with her rising fame and notoriety. As a mother, she wore the scars of torment about not “being there” for her children. She kept this a secret for many years before circumstances encouraged her to walk away from it all. This decision, not understood or embraced by some close to her significantly changed her life as she struggled to redefine herself and produce income that would allow her family to maintain their life-style. Carla succumbed to cancer several years later; a disease now understood to be linked, in part, to multiple life stressors.12

50 Chapter 3

Carla’s story highlights feelings of unhappiness, regrets, secrets, disappointments, worry, and perceived racism. The persistent physiological and psychological weathering caused by such feelings, is a significant part of Carla’s story and the pregnancy stories of all the women in this study, which goes unseen and untold, but is now supported by research.

Transgenerational Transmission of Stress “I have come to believe that as Black women our threshold for pain is too high. We have embraced very destructive beliefs about our ability to ‘handle it all,’ our power to overcome in the face of trauma, our ability to put ourselves aside as we tend to the needs of our employers, partners, children, family, everyone but ourselves” Terri Williams (2008) The influence of a racial history, culture, and family shaped the women’s responses to stress in complex ways, as revealed by the majority (five) of women in this study. The accounts of the women in this section help in understanding the sources of stress, and how they coped with, and perceived the stress in their lives. April places her expectation of self in the context of her family’s history: I grew up with a bunch of older woman, my mother’s the only girl to her mom; there are four children and she’s the eldest. For me the aunts I had were my mother’s aunts, so I grew up with what I call ancient wisdom; with these older woman in the family and that’s who I was around most of my growing life. My mom had to work so I was with them, I was there with them in their trenches; learning from them, caring for them, being with them, you know I was the one in the family who learned this stuff. So in the family I’m the one now who does the things that my great aunt and my grandmother all of them are passed now, yeah I do; I’m the burden woman, I’m the one that everybody comes to, including my mother; when she’s sick or has a cold, or they have a cut, or they need something created, I’m the seamstress, or whatever it takes. So it was completely normal to feel that with three children and a baby on the way that I could continue to work and do all the things that I normally do.

In the description below, Yvonne credits an “ingrained” history and her husband’s minimal help in explaining why adding another child to her family would be fine: So work was work, I think just the hustle and bustle of family life was just a lot. Umm, honestly we do it because we have to, and as women you know as black women we have ingrained in us that level of strength and tenacity. But

Women’s Experience with Stress 51 without my husband, I don’t know how I would do it because when I became pregnant, you know of course we have to give them a little nudge (husband) and once you give them the nudge they fall in place and then they do, they step up. Then you have to remind them again. So he would do the dishes, or do something that he wouldn’t normally do that I would be responsible for doing, to ease some of the stress but it was a lot, (her stress) you know with the nausea and just feeling bad, ill and then having to do everything else, it was a lot. So you take a little breather and then you get up and you do what you need to because it all has to get done, and I have to work. That’s my reality.

The notion that “we do it because we have to as women” takes on a feeling of inevitably rather than choice. It is an idea, which deserves scrutiny with other ideas that set black women up for carrying unnecessary burdens, increasing the chances for health issues in general and poor pregnancy outcomes. Dorothy, who had a demanding job at a hospital as an OB/GYN, revealed an almost stubbornness in not yielding to the apparent physical challenges her pregnancy was causing. Although she experienced “a physical pressure” as her fetus grew, which often required her to sit while operating or to hold her stomach up, she continued to perform her duties as if all were well: I learned from my mother who worked everyday, like now I tell people you don’t even know what a sick day was. You had to be dead and if you weren’t dead she was gonna kill you (laughs) you were going to school. She was born and raised in New York. She is just like her mother who was also a very hard worker. You have to do it for yourself, you always have to be able to do it for yourself so don’t depend on anybody else. Yeah I definitely didn’t attribute any particular problem to stress, or think that I had any problems at all; I thought that I was fine. Because I was working in a teaching hospital it was really not like I was operating by myself, it was more like supervising residents which afforded me the opportunity to be able to sit down when I needed to. You know I really didn’t, I didn’t have any pregnancies before. I didn’t perceive that I had any problems, so I thought it’s not really a big deal, even knowing that Derrick (husband) was not in the country at the time. I was living at home, at that time we were living in a house, in a townhouse. So you know I didn’t have any maintenance, they took care of the grounds; they took care of the snow. So all I did was drive, go out and come home. You know, most of my stressful interaction was just with umm, being at work, but I had that, wasn’t necessarily unusual for me.

Linda felt that her experiences while pregnant were similar to that of most black women:

52 Chapter 3 Nothing really changed at home. When I got home, I cooked and assumed responsibility for our three year old, and did all else as I would normally do. It was no different for other black women who had to do the same. The celebration was over. I think with my first child the celebration lasted a little longer.

Freddie shared that she often thought about her mother’s circumstances while pregnant compared to her own pregnancy: There was no change. I was working for a company that had a 24 hour operation. I started out on a part-time basis working nights and then became a manager. I continued to work nights because that is what I was used to. I was either sleeping or indoors during the daylight hours and this was the shift I’ve been on for years. I was very close to my Mom, her oldest child, and she worked while pregnant, plus much, much more. It was rough for her. I think about her often. She was very strong, still is. Black women always had to struggle but we are so strong. I planned to work, yeah; I just did not anticipate feeling so bad.

Perspectives on Stress The most important adjustment in thinking in relation to BIM is an emerging understanding that improvement in a mother’s socioeconomic status does not protect black infants from mortality and low birth weights as much as it does white infants. What is evident, over the course of almost fifteen years, is significant literature and research focused on the overarching role of race as a differentiating factor on individual and institutional levels in understanding healthcare disparities. It is important to understand and accept the notion that institutional racism is an unpleasant reality for all blacks across the socioeconomic spectrum with real health consequences attached.13 According to the IOM Report (2003), although the overall health in the U.S. population has steadily improved, the evidence of health disparities across all medical diagnoses is significantly higher for racial and ethnic minorities than for whites. Such disparities are persistent and appear to validate the presence of institutional racism, which has an insidious and historical presence in housing, employment, education, etc, and is well documented; a major social condition contributing to racial disparities in health in general, and BIM specifically. Link and Phelan’s (1995) theory that some social conditions may be fundamental causes of disease provide an important perspective in the examination of health disparities including BIM. The researchers define social conditions as factors involved in a person’s relationship to other people. This includes relationships with spouse/partner, positions occupied within one’s social and economic structures, in addition to factors such as race, gender, stressful life events, as well as stress-process variables like social support.

Women’s Experience with Stress 53

Fundamental causes embody access to important resources, affect multiple disease outcomes through multiple mechanisms, and consequently maintain an association with the disease, even when intervening methods change. The researchers assert that fundamental causes require broad-based societal interventions that could result in substantial health benefits to diseased populations. A broad-based societal intervention is a formidable feat given where the public is on accepting and/or understanding that the United States has real problems when it comes to health disparities related to minorities. The Office of Minority Health issued a summary of findings related to the U.S. public’s awareness of racial and ethnic disparities in health care from 19992010, which revealed that people are more aware of long-standing racial and ethnic health disparities, such as life expectancy and health insurance coverage, than they are about how racial and ethnic minority populations are disproportionally affected by a number of serious diseases and conditions. More disappointing is that although IM continues to disproportionately affect minority populations, the 2009 study found that awareness of this disparity by the general public had actually decreased over the decade, adding another layer of difficulty in redressing BIM. Although the issue of BIM is also not widely known in the black community, there is an understanding of the presence of major attributing factors attached to health disparities, underscored by research conducted by Barnes (2007) to better understand perspectives held by African-American women related to the racial gap in infant mortality. A total of thirteen women participated in the study, who were middle class and college educated (two doctoral level), the majority married, ages ranging from the early thirties to the mid-sixties. Ten of the participants had experienced at least one pregnancy and three had experienced a loss due to miscarriage. A major finding was the consistent interplay the participants reported between race and stress described as having historical roots and being firmly planted in the current lives of African-American women affecting health and pregnancy outcomes.

Women’s Perception of Stress The overwhelming majority of the women in this study (seven) recognized stress during their pregnancy, but did not articulate a connection between such stress and its effect on their pregnancy. The exception was Yvonne, who told her husband during an intense argument, “You could stress me out and cause a miscarriage.” Interestingly research findings support her assertion, demonstrating that women who are caregivers (mothers) heal more slowly after a spousal argument. They tend to experience prolonged stress

54 Chapter 3

response with physiological consequences.14 For the other women there was an acceptance of stress, but a tendency to devalue its importance. Such devaluing of stress is a result of determining that it is not a priority in light of all of the other events and circumstances they must address in their day-to-day lives. As one woman stated, “I don’t have time to assess or deal with stress, I just live with it!”

Recognizing and Living with Stress Yvonne acknowledged that thinking about needing to prepare for her newborn was adding to her “everyday stress,” but she tried not to think about it: In terms of what may have been added to my everyday stress was probably just the preparation, the realistic preparation of the adding this life to our lives. Getting the guest room ready, umm financial issues, paying for daycare and a babysitter, who am I gonna get to take care, cause I really want them to go to a daycare center as opposed to a homecare provider, and just the overall preparation and finances. Umm, and I tried not to think about it during the first trimester.

Wileta recalled problems with her teenage son during her pregnancy: We were married for about two years, my son was fourteen and I was working full-time. Everything was pretty much I’m trying to remember but everything was pretty much normal. We were and are still working on two major projects; two music albums. This took a lot of time, along with work. Anthony (son) had school issues. His school issues were always stressful. This particular year it was very stressful because he was attending a Catholic school, and he was being mistreated, so I was kind of at war with them.

Linda recalls having a lot on her mind: Looking back I think I had a lot on my mind. It was enough in dealing with my son and all the other things. It was a weird time. I know I was dealing with lots of stuff. It was a weird time. I was not sure about how things were going to stand with my marriage. It was just a weird time.

Coping with Stress It takes a great deal of cognitive and emotional energy to constantly respond to stressful events while at the same time, needing to project a stance

Women’s Experience with Stress 55

of business as usual. The majority of the women (five) shared coping styles, “I did not want to think about it,” “I could only let in little pieces at a time,” which suggested that often the weight of the stressors exceeded their capacity to cope. Unfortunately, many of the women employed coping styles, which were ineffective. Yvonne described placing stress “on hold:” I tried to, I made a conscious effort to say okay I’ll deal with the happy things like getting the room ready, and telling everybody, but it still was there (stress). You can’t put stress on hold. I would drink hot tea frequently; the flavored teas, and peppermint tea, chamomile tea. I would drink tea at night to relax myself.

Yvonne spoke about her attempts to “delay stress” which raises an interesting point. Stress is both experiential and anticipated, which means the anticipation of stressful events can produce the same physiological responses as the actual event. Therefore, her attempt to reduce stress was actually creating stress.15 Alana preferred not to think about things, just let a little bit in (stress) at a time. She stated, “I never stopped to look at all the things I was dealing with. If I had done that, I probably would not have functioned. I just took one day at a time.” Linda admits to trying to select the amount of stress she “let in:” Maybe I knew that I could not bear knowing some things at the time. I could only let in little pieces at a time. More than that would be too much to handle. There were some things I felt, that would not go away. It was important to maintain some semblance of normalcy.

Wileta did not want to acknowledge stress: I can’t say that it (stress) contributed to (loss of infant), because I was so busy with other things; there was not much time to let things get me down. But I remember that was something that was also going on at that the time. Clay (husband) usually lets me handle the school stuff and the family in general. While we were fine I remember the day after I lost the baby I remember going alone to the parent-teacher’s night because there was serious stuff going on at school. They were trying to expel my son from school. I had been dealing with this, but it had now reached a peak and I was alone.

Dorothy talked about not seeing stress as stress: You know I am also more informed about stress and its relationship to prematurity. And what sometimes we call stress, sometimes we’re not looking at it as stress, sometimes me as the individual I’m not looking at it as stress because that’s just who I am.

56 Chapter 3

As mentioned, the research is substantial on the risk of low birth weight and infant mortality if the mother experienced stress during her pregnancy. The recognition of stress and the role it plays on one’s health has important implications in addressing the high IM rates for Blacks.

Sources of Stress If the research is pointing to stress as playing a major role in BIM we are then challenged to understand how to measure the presence of stress, how to determine the kinds of stress that contribute to poor health, and its consequence on the mother and fetus. The women in this study provide lived pregnancy experiences adding power to the data, which is difficult to discount in understanding this stubborn phenomenon, BIM. Their stories shine light on those places where stress hides, where and when it takes place daily invisibly intruding on psyches and bodies. There are considerable research studies which demonstrate measurable stress responses to pregnancy issues concerning the health of the baby and the delivery process (warning signs). For example, Wadhwa (1996) found an association between pregnancies related anxiety and fears, specifically associated to the heath of the baby and the labor process to maternal neuroendocrine levels, which can have an effect on birth outcomes. Additional findings in the same research study substantiate the link between chronic life stress, which is the degree to which life situations are experienced as stressful (i.e., worry about finances; problematic relationship with spouse; and experiences with racism) and measurable changes in neuroendocrine levels, again implicated in pre-mature births.

Medical Symptoms Warning signs, as discussed in chapter 2, were experienced by seven of the eight women. Warning signs were medical symptoms that went unresolved, and were often severe and persistent in nature; probable precursors to adverse birth outcomes. Several of the women used words such as “scared,” “worried” and shared a sense of something “not feeling right” in relation to the medical symptoms they were experiencing. Yvonne, for example, stated that from early in her pregnancy, she felt that, “Something was not right.” In this section warning signs emerged as a source of stress, while in chapter 2, warning signs (medical complaints) were presented as the probable first signs of medical issues; a dangerous set of issues both having an adverse affect on birth outcome.

Women’s Experience with Stress 57

Warning signs are of particular importance in this discussion as sources of stress as demonstrated in the aforementioned study, Wadhwa,1996, demonstrating the association between pregnancy related anxiety and stress related neuroendocrine levels found to be implicated in the initiation of preterm labor.16 Such anxiety was experienced by the overwhelming majority of the women in this study. For example, Linda was very anxious about the size of her pregnancy, along with her necessary monitoring by a hematologist: For one thing, after my third month I had to inform the job because I had expanded so quickly. I really could not understand how I was going to make it to nine months, I was getting so big and I was carrying low. Everything was always fine even when she (doctor) referred me to the Hematologist to ‘keep an eye on my clotting factor.’ He (Hematologist) assured me that everything was fine. I was scheduled to see him monthly for monitoring. That scared me.

Tina was worried: So when I was home I was in bed, because I was either too tired or too sick. I was worried about this because on some days I was not functioning and I had a three year old and a job.

Freddie’s worry was only relieved when she heard the baby’s heart beat: I stayed very sick to my stomach from the very beginning. My doctor did all kinds of blood tests, including HIV but everything came back negative. We heard the heartbeat of the baby and I felt better, but still worried.

Wileta’s high anxiety was in anticipation of the delivery: I always had mental issues concerning pregnancy because I was always umm even with my first child the issues for me, carrying the baby was fine, but I always worked myself up when thinking about actual delivery. Constantly my thought process always took me to delivery, how it was going to happen. I always had issues with the process of having a baby, because my fears always took me there (delivery).

It Is Not Job Security A surprising finding was that the women did not note job security as a source of stress. This was somewhat puzzling given the current financial climate for blacks across the economic spectrum. According to the Bureau of Labor Statistics (2012) report, the unemployment rate is 13.2 and 7.0 for

58 Chapter 3

African-American and White women respectively for 2011. In light of the current job climate, the rising number of black women assuming the role of breadwinner, and history of discrimination in the job market, employment security was expected to be a source of stress for the majority of women in this study. What emerged instead was a view of the job as a source of emotional support where friendships were strong, and a sense of worth affirmed. As demonstrated in the descriptions below, the majority of the women in this study (six out of seven, Alana stopped working) did not cite job security as an issue. Additionally, the majority of the women in this study, (six out of seven) did not view the nature of their work as a source of stress. For example, Dorothy did not view her stress at work as unusual: At that time also I had been working about three years after finishing my training, and I was working basically in a hospital based practice. So I was in the hospital everyday, covering a labor floor, doing surgeries, going to clinic, all that kind of stuff. Nothing that was stressful or unusual for me.

Wileta had similar feelings, “My job has never been stressful, so that’s never been an issue.” April found her job easy: I was working in an alternative high school so those hours were kind of set. I was very familiar with the, and the job, it wasn’t a hard job; it wasn’t any lifting or tugging. I sat down at that desk and I advised teenagers all day. So it was a job, and was I OK with it. I liked working with the students. I didn’t find the job stressful.

In contrast, Linda who enjoyed her work felt that her job was a source of stress: I loved my job which was stressful at times, because of the issues and deadlines I always faced. But I think it was especially stressful during this period because of the new wrinkles (promotion prospect and pregnancy). At certain points I really felt I was under the microscope. So many people seemed to be depending on me to aggressively go after the job.

Unlike the other women, Tina’s feelings about her job were negative, “I was in a job I hated, so that was stressful.” Alana was the only woman who did not continue to work at the instruction of her physician. Prior to that, she was employed as a student counselor, a job she enjoyed.

Women’s Experience with Stress 59

Lack of Financial Options On the other hand, the majority of the women (five) expressed feelings of frustration, uneasiness and disappointment with regard to their financial options. All of the women in this study had full-time professional jobs at the time of pregnancy discovery. Such jobs did not add to their ability to take extended time off for childcare, underscored by statistical data in relation to the disparity of wealth in the United States. 17 For most of the women in this study, maintaining their family’s level of financial security was not possible without the income they generated, along with her spouse. There were no excess funds set aside at the time of this pregnancy to accommodate extended time off, and this was a source of frustration as the women tried to balance work with motherhood, or anticipated motherhood. Such frustration was exasperated by experiencing sickness throughout most of their pregnancies at work and for some feelings of vulnerability in relation to finances was “scary” due to relationship issues with their spouse. More often, there was a feeling of disappointment expressed about needing to work throughout the entire pregnancy, and not having the option to take extended time off after the anticipated birth of the baby. Linda’s frustration was exasperated by the prospects of a job promotion: I knew I needed to stay on, we needed two salaries, but how happy would I be knowing that I did not pursue the job and I had to then work under someone else? Maybe if I also had the option of walking away, I would have felt differently; but I needed the job. I was just feeling uneasy about the whole thing.

Yvonne seemed a little angry at her husband, and disappointed in his inability to be the sole breadwinner: After each birth, I didn’t want to go back to work. Well, well you know we had discussions about that. And of course the ultimate answer was no. ‘I’m sorry honey but we’re not at the point where I can be the sole breadwinner, and still live here in New York and still have the things we want to have.’ So I just knew that I had to go back to work, you know it did bother me but again, it is what it is, that’s our reality. I just had to; I wanted to at least have as much time as possible, at home. Yes. Yes, and I looked forward to my summers off, that’s what helped. But I wished things were different.

Tina’s uncertainty about her marriage gave her even less options: Yes I was worried about me taking care of me. I really was not making the kind of money to live independently with a baby and a three year old. I couldn’t leave my job, we needed both salaries. I was not happy about my job. I was looking into making a change, before everything unfolded. I did not feel supported by Frank (husband) at this time. I even started thinking about

60 Chapter 3 my options. It was a very unsettling time for me. Things felt up and down all of the time.

Freddie felt some pressure due to their new financial obligations. I could not stop working, we needed both jobs, especially now. We had new obligations, new house, and plans which required both salaries. There were times that I was not sure. I was feeling so sick and so tired, I wanted to stop working, but I couldn’t.

Alana, who was placed on restricted activity and instructed to stop working. This created additional stress, as her husband’s financial support was unpredictable. I was told to stop (working). On top of everything else, this was rough financially. We needed both jobs. So it was, you know not knowing when he was going to come in, not knowing when he was gonna give me money for household expenses, you know worried about things like that. With the twins during this pregnancy, it was more mental abuse.

Perceived Racism Throughout this chapter and in preceding chapters, perceived racism was part of the women’s everyday experiences, alluded to in most instances while at other times shared directly. For example, Linda’s encounters with her doctor were charged with feelings of anger and hurt, based on a perception of racial bias. As discussed, the link between such negative racial encounters, perceived or actual, with high blood pressure, elevated heartbeats, and a host of internal physiological responses are measurable and consequential. Therefore, unbeknownst to Linda her doctor visits were actually harmful to her health. Additionally, stress responses to racism can be triggered by the memory of a direct assault, daily exposure to institutional racism, and/or the suspicion of racism. Responses are also triggered in anticipation of a racial encounter, all adding to stress loads beyond the “normal” parameters.18 The results in one research survey would suggest that there is a close match between what blacks convey they perceive in relation to racism and the stereotypical views held by Whites. A national survey conducted by Davis and Smith (1990) found that 56 percent of Caucasians believed that blacks prefer to live off welfare, 51 percent viewed blacks as unintelligent, and 44 percent viewed blacks as lazy. Comparatively, white persons believed that only 4 percent of whites prefer to live off welfare, 6 percent are unintelligent and 5 percent are lazy. Unfortunately, what was revealed in the political and public discourse during the 2012 Presidential election would suggest that such views remain current and pervasive.

Women’s Experience with Stress 61

Dorothy interjected her experience with racism into her account in an interesting way as she reflected on perceived stress. It was as if she were breaking her silence on a long-standing experience, which she had internalized. This is an important point as black women who reported having experienced some form of racial discrimination are almost three times more likely to have a very low birth weight infant, increasing the chances for mortality:19 Because you’re used to being; you haven’t gotten here by not thinking that people are racist, or not thinking that people are prejudiced against you, not knowing that people have pre-judged you. That’s what you deal with, that’s what you have dealt with every day of your life. But what I’m saying is that as a human being you’re not thinking, oh I’m getting stressed out at this moment.

Silent Burdens It was June 1986; I sat next to Faith’s hospital bed in Lenox Hill Hospital, N.Y. during her final days. She was forty-five year old AfricanAmerican woman, the primary financial supporter of her family, which consisted of her mother and son then twenty-one years old. She earned her living as a successful professional singer/actress. Her “formidable” fight, as she would call it, with uterine cancer was ending, and during her last moments she unexpectedly lay bare what she described as “my secrets.” There was no exact beginning to her release, but rather a steady coherent stream of regrets, heartaches, feelings of anger, and sadness, details of her life’s unfinished business. I sat there uncomfortable at times, which must have been apparent as she would say from time-to time that her need was only to share with someone what she had not been able to share before this time, her final days. There was no responsibility or expectation other than to assume the role of “listener,” a fitting role for someone like me a friend who was sufficiently peripheral to her life, and presumably a neutral ear. Her death caused questions about what lessons life was offering me “the listener” now the keeper of Faith’s secrets. Other questions surfaced: how such secrets had affected her life, her health, and why had she decided to release what was apparently her life’s heavy burdens then; would things have worked out differently if she had freed herself of the burden of her secrets sooner, would she be alive? What she disclosed weighed heavily on me the “listener” for years after her death. There were no simple answers, only regrets for Faith, as her life seemed so unfinished. It was hard to imagine how her secrets had weighed on her life. It was this experience with Faith, which helped me to recognize secrets as a theme which emerged at different points in this study; a silent burden.

62 Chapter 3

Several of the women held secrets in relation to their worry, and fears about past abortions, or wanting to terminate their pregnancy. They kept the warning signs they were experiencing a secret, not fully accepting the assurances from their doctors that everything was fine. Several of the women held feelings of anger towards their spouse, and regrets about past decisions in secrecy.

Secrets Five of the women in this study reported hiding personal and important information in relation to their pregnancy. Pennebaker’s (2003) research on secrets demonstrated the link between hiding traumatic or important information connected to one’s personal life to increased incidence of stress related diseases including influenza, and even cancer. In this study, the issue of secrets in relation to pregnancies surfaced for most of the women, at different points. The secrets that Carla held became evident as she drew nearer to a resolution in the struggle between work and family. Yvonne, Dorothy, and Freddie shared not ever discussing with their spouse, or anyone close to them their feelings of ambivalence, fears, and pressures experienced in relation to having a baby, discussed in chapter 1. There were secrets held in relation to spouses’ infidelity. Secrets faced again, when Alana shared with researcher that she did not tell her doctor about her spousal abuse, “Because he did not ask.” Alana and her mother were the keepers of Alana’s secret about her abuse. She shared, “It was just crazy. I was too ashamed to let anyone know what was going on. I went through all kinds of changes to hide it (husband’s abuse) I was just crazy.” Tina shared living a lie for the sake of appearances: I felt we put up that façade for the sake of the family. I don’t know if my husband thought or believed it, but I didn’t. Most times I did not know what my husband thought. I went to my doctor a couple weeks after. I was considering having an abortion. I felt terrible. You know I was thinking about what I thought of doing early on, and feeling like this was my punishment.

Freddie felt guilty about having an abortion several years prior to this pregnancy: I had an abortion several years prior and I thought this was God’s way of punishing me. Maybe I did something wrong. I was very hurt. Why me? I never

told anyone, I just felt very guilty. Yvonne kept a secret about how she was feeling, “something was not right.” This was true for all of the women who “had a feeling.” In some cases, they shared their feelings with someone close, but once they received

Women’s Experience with Stress 63

some reassurance from the doctor, they no longer spoke about it although the feelings remained. Linda and Tina held secrets in relation to their suspicions about their spouses’ infidelity. After I first mentioned how I was feeling to my Mom, I know I kept that worry to myself. I felt that something was not right, but the doctor kept telling me otherwise, until the end.

Throughout the interviews, I suspected that secrets was an area needing increased research as what was disclosed seemed only to reveal the tip of the iceberg with probable health consequences.

Relationship with Spouse The majority of women (six) spoke of problematic issues in their relationships with their spouses extending throughout their pregnancy and for some, throughout their marriages. The importance of spousal involvement is an area of importance as much of the literature confirms such involvement to be a protective factor against adverse pregnancy outcomes. The next chapter (chapter 4) will present findings and extended discussions on the paternal role during pregnancy.

Increased Susceptibility to Maternal Stress Although the experience of stress was an area of planned exploration, the degree to which themes attached to stress emerged prior to this chapter was unexpected. The findings in this chapter clearly builds on the themes related to stress, and begins to answer an overarching question as to why were the women in this study so susceptible to maternal stress? Part of the answer is found in the responses of black women to historical stereotypes and racist views, which have not been easy to decipher. Black women, and their mates, seem to continue to hold onto the idea of the black woman as an indestructible “workhorse” needing to prove a standard of worth in an attempt to shed haunting past held views; in this study evidenced in the business as usual stance. Additionally, a related theme to emerge was that of self-expectation, again influenced by a racial history, which helped to shape the women’s perspective on the experience of stress in their lives. There was a tension between self-expectation and the perception and consequence of stress in their

.

64 Chapter 3

lives. It became clear that it was difficult for the women in this study to give full value to the consequences of stress in their lives because of an “ingrained” sense of almost supernatural powers to do it all like their mothers and the women before them. Some of the tension was resolved by employing what seemed to be ineffective coping styles in relation to stress, which did very little to reduce stress, but made the women feel more in control of stressful events in their lives. The words of the women gave recognition to the presence of stressful events and situations in their lives but, for the most part, they did not link stress to consequences involving their health or the health of their unborn baby. As sources of stress were explored the women revealed a range of observed emotions especially when talking about the lack of financial options connected to wanting flexible time off and problematic issues with their spouse. Other sources of stress were presumed as factors and circumstances were presented, which possessed inherent qualities that produce measurable stress responses. Stress related to race emerged in interesting ways. The women tended to allude to its presence rather than refer to specific encounters with racism. The “if I were white” statement made by Carla is loaded with meaning, reflecting layers of thoughts connected to a racial history. The overarching finding in this chapter is exposure to significant life stressors in important areas of the lives of each of the women (finances, marriage, health, home), and a unique perspective on how the women experienced and dealt with such stress, which seemed linked to family, culture, history, race and a sense of self-expectation. This perspective could have affected their ability to connect their experiences with stress to health consequences for themselves and their unborn fetus. Additionally, the fact that the majority of the women in this study had prior successful pregnancies may have affected their perception of the role of stress in relation to their pregnancy loss, although aspects of their lives were significantly different during this pregnancy. This is an area, which falls outside of the current research. In total, the findings reveal a cumulative combination of factors attached to stress responses affecting the woman’s health and the health of her fetus, increasingly present as the pregnancy progressed making each woman that more vulnerable to having a negative pregnancy outcome.

Notes 1. Brian D. Smedley, Adrienne Y. Stith, and Alan R. Nelson, eds. “Assessing Potential Sources of Racial and Ethnic Disparities in Care: The Clinical Encounter,” Institute of Medicine 2003,

Women’s Experience with Stress 65 http://www.nap.edu/openbook.php?record_id=10260&page=160 (accessed June, 2009). 2. Rickie Solinger, Wake Up Little Susie: Single Pregnant and Race Before Roe vs. Wade (New York, N.Y. Routledge, 1992), 20-84. 3. Marci Lobel, Jada G. Hamilton, and Dolores T. Cannella, “Psychosocial Perspectives on Pregnancy: Prenatal Maternal Stress and Coping,” Social and Personality Psychology Compass 2, no. 4 (2008): 1600-1623. 4. Bruce S. McEwen, “Allostasis and Allostatic Load: Implications for Neuropsychopharmacology,” Neuropsychopharmacology 22, no. 2 (February 2000): 108–124. 5. Bruce S. McEwen and Eliot Stellar, “Stress and the Individual Mechanisms Ending to Disease,” Arch Intern Medicine 153, no. 18 (Fall 1993): 2093-2101. 6. Arline T. Geronimus, “The Weathering Hypothesis and the Health of AfricanAmerican Women and Infants: Evidence and Speculation,” Ethnicity and Disease 2, no. 3 (1992): 207-221. 7. Patrick D. Wadhwa, “Developmental Origins of Health and Disease: Brief History of the Approach and Current Focus on Epigenetic Mechanisms,” Semen Reproductive Medicine 27, no. 5 (September 2009): 358–368. 8. Maria P. Root, “Women of Color and Traumatic Stress in Domestic Captivity: Gender and Race as Disempowering Statuses,” American Psychological Association (Washington, D.C. 1996): 363-388. 9. Solinger, Wake Up Little Susie, 41-83. 10. Shelly P. Harrell, “A Multidimensional Conceptualization of Racism-Related Stress: Implications for the Well Being of People of Color,” American Journal of Orthopsychiatry 70, no. 1 (January 2000): 42-54. 11. Root, “Women of Color,” 363-388. 12. Ronit Peled et al., “Breast Cancer, Psychological Distress and Life Events among Young Women,” BMC Cancer 4, no. 8 (September/October 2008): 245-252. 13. Smedley, “Assessing Potential Sources of Stress,” 160-179. 14. Janice K Kiecolt-Glaser, et al., “Slowing of Wound Healing by Psychological Stress.” Lancet 346, no. 4 (November 1995): 1194-1196. 15. Daniel M. Wegner, White Bears and other Unwanted Thoughts: Suppression, Obsession, and the Psychology of Mental Control, (New York: Guilford Press, 1994 Edition). 16. Mark McLean, et al., “A Placental Clock Controlling Length of Human Pregnancy,” Natural Medicine 1, no. 5 (1995 May): 460-463. 17. According to PEW Research Center (2011) in relation to wealth, white households are now worth 20 times that of blacks and 18 times more than Hispanics. The median white household is worth $113,000, Hispanics about $6,000 and blacks about $5,700. 18. Shelly P. Harrell, “A Multidimensional Conceptualization of Racism-related Stress: Implications for the Well Being of People of Color,” American Journal of Orthopsychiatry 70, no.1 (2000): 42-54. 19. Sarah Mustillo, Nancy Krieger, and Erica Gunderson, “Self- Reported Experiences of Racial Discrimination and Black-White Differences in Preterm and Low Birth Weight Deliveries,” The CARDIA Study. American Journal of Public Health 94, no.12 (December 2004): 2125-2131.

CHAPTER 4

Fathers and Pregnancy Involvement: A Role of a Lifetime Yvonne As women we’re carrying that baby so naturally we’re going to be in distress. And you don’t think that men, connect with the babies as your carrying them. He (spouse) was definitely connected with this pregnancy and that baby. Umm, my Mom even told me that he cried with her on the phone.

Paternal Role in the Pregnancy Experience The value of the black father’s role in the pregnancy experience is an issue that should stand without study. However, such investigations might tell us more about how society views black fathers’ importance in relation to fathering, a subject having deep roots in history, inculcated into the culture, and insidiously present in relationships. The negative stereotypes of black fathers either being absent and/or not “being the man” for his children, have influenced perceptions on the value of his role and worth as a partner in the pregnancy experience and as father. On many levels such stereotypes are corroborated by facts, even if such facts are perpetuated by the very system implicated in rendering black men ineffectual. Notwithstanding, according to the 2010 Census Report there were almost 38 percent of black married couples compared to 75 percent of white married couples, the lowest percent of married couples for all racial-ethnic groups. Black female headed households were 40 percent, exceeding the number of married black couples raising a family and the highest of all single parent

68 Chapter 4

racial-ethnic groups. In 1991 the percentage of black children living solely with their mothers was 47 percent, not differing much from the 50 percent level noted in 2009. The Annie E. Casey Foundation’s most recent report (2011) indicates that this number dramatically increased with single-black female headed families at 67 percent, compared to white single femaleheaded families at 25 percent. Such facts could easily cause observers to believe that fathers are literally absent or just not living up to their paternal responsibilities. This is a complex issue requiring the peeling away of a number of layers in gaining an understanding of facts vs. stereotypes.1 However, the perception of the black male as being ineffectual in relation to his parenting responsibilities is very much part of the American psyche. The degree to which this perception of the black father has found its way into the psyche of black men and women regardless of socio-economic status is an interesting question. Quinn (2008) conducted the first known qualitative study to look at the perceptions and beliefs of involvement in pregnancy outcomes among black men at the community level. Her study sought to examine black men’s perceptions of infant mortality in a high-risk community in the state of Florida. Specifically, the goal was to explore men’s perceptions of recent data showing that their community had an IMR higher than the state and national average. Quinn’s study demonstrated that BIM is an issue not known to the black male community, a fact also revealed in this study. The men identified many of the issues commonly attached to the issue of BIM as possible causes, and advocated for wide-scale education on the issue in black communities. Corroboration of Quinn’s major finding was made by a population-wide study conducted by The Office of Minority Health, 2010 coinciding with the time of this study. Their research focused on the U.S. public’s awareness of racial and ethnic disparities in health care from 1999-2010. It found that awareness of the disparity in black and white IM rates had actually decreased over the decade. The general public has little awareness of the problem of BIM with improvement noted in the percentage of African-American’s awareness of BIM, years subsequent to Quinn’s research. Nonetheless, black men agree that their involvement in the pregnancy experience is consequential, supported by research which demonstrates a link between active paternal involvement during pregnancy and improved birth outcomes while lack of paternal involvement is linked with socioeconomic inequality and inadequate prenatal care.2, 3 The male partner may also affect infant birth weight indirectly through socio-cultural issues, including financial and/or emotional support.4 It is clear that there is much ground to cover in bringing black men into the fold on the issue of BIM. History and culture serve as obstacles, as issues related to pregnancy traditionally remain in a domain assigned to women, with such positioning supported by women, as revealed by Yvonne’s opening quote. For example, in the pre-planning stages it was not at all clear if the fathers in his study had a meaningful role in the planning process, as the

Fathers and Pregnancy Involvement 69

women’s accounts reveal their husband’s tacit agreement with her personal decision to have a baby prior to any joint planning. This feeds into the uncertainty that many black men voice in relation to their expected role in their “wife’s” pregnancy. Keeping the male peripheral during early planning pregnancy stages provides “permission” for him to take a less than active role in the pregnancy; in many ways a precursor to paternal involvement during all stages of child’s development. These are some of the issues which surfaced in this study worthy of discussion in this chapter. The focus of this chapter is on factors explicated in this study linked to fathers and BIM, and how the women perceived their husband’s role as gleaned through their accounts. It is an important and interesting perspective, as the material that surfaced suggested interplay between husband and wife resulting in a silent agreement on the roles the two would assume in relation to the pregnancy. The accounts also reveal a convergence of culture, personal dynamics, and forces attached to the transitioning of roles of men and women in America, a natural course of events mostly driven by economics causing some tension. There was also an interest to include the voices of the men in this study, albeit ascertained from their wife’s point of view, is believed to be of value here as we examine fathers and BIM.

Women’s Perception of Fathers It is clear that the black male’s voice is missing from the research on BIM. Additionally, there is little qualitative research, which focuses on black women’s lived experience of pregnancy loss, the aim of this study. Although, the direct input of fathers is admittedly deliberately missing from this study, in the sections below the discussion is an attempt to share the voices, attitudes and the perceived roles of the fathers which surfaced from underneath the more apparent material provided by the words of the women. All of the women in this study were married, and therefore embedded in their pregnancy stories from their perspective were their husbands’ voice, which was sometimes soft and consistent, or loud and threatening, sometimes unclear, or confusing, and in some cases null-and-void. They were the unseen participants in this study, however, their positioning in relation to the pregnancy story became increasingly clear and impressions about how they were viewed by their wives took shape as the interviews progressed.

70 Chapter 4

Unseen Participants Derrick In chapter 1, the reader was introduced to each woman in the context of the first theme to emerge—personal decision—to have a baby despite a host of facts that seemed counter to that decision. For example, the fact that Dorothy made a decision to have her first baby while fully aware that her husband would be out of the country during her entire pregnancy was perplexing, and “unwise” as she described it. Perhaps she did not give much value to the importance of her husband’s role or perhaps she viewed his presence as an added burden: You know the fact that he wasn’t there at that time, in my mind wasn’t an issue, because I could go home, I could go to sleep and not have to do anything. I did not have to worry about cooking dinner or washing the clothes, if I did not feel like it!

Her words took on added meaning when she was observed in her home with her family. Although Dorothy described her day as starting at 5:30 a.m. and ending around 11:00 p.m. she still performed the traditional tasks, completing the after-dinner chores, which followed the preparation of dinner with an almost three year old requiring her attention, even though her husband was at home. “He must be resting,” was her comment as she attempted to summon his help with their daughter so that she could give attention to why I was there. The expectations of roles probably dictated by culture appeared prominent, since both Dorothy and her husband were working as full-time physicians, which would seem to require some modification of traditional roles. Derrick’s voice was noticeably influential with regard to sustaining traditional roles even during changed times. The unexpressed tension it was creating was perhaps evidenced in Dorothy not wanting him to be present during pregnancy. However, changes were only made as instructed by her physician and implemented when Dorothy learned that she was expecting her second baby, which speaks to lessons learned causing modifications in Dorothy ‘s expectation of self and yielding to the pressure of Derrick’s culture.

Kevin Yvonne’s insistence on having a third baby, counter to her own assessment of her life at the time speaks volumes about the power of her internal motivations in relation to having a baby. There was no mention of Kevin or his thoughts about having another baby, and it was clear that her preoccupation about a third child did not include much input from him. Yvonne offered a final statement on the decision to have a third child which suggested that they were both happy with the decision. “I, we decided yes with all the defi-

Fathers and Pregnancy Involvement 71

cits like the finance and time, was less than the joy of having that third baby.” Kevin was described later by Yvonne as “non-communicative.” He finally did reveal how he felt when pushed to consider his wife’s request to stop working following the birth of the expected third baby. He conveyed concerns about finances, and sustaining the current life-style, which were pressures enough in his view. His resounding “no” was naturally met with disappointment and some anger from Yvonne. Although Kevin was described as sometimes passive by Yvonne, “you just have to tell them (men) what to do,” there were enough indications throughout the course of the contacts to suggest that he was not happy about the decision to have a third baby, he just seemed unable to verbalized it, or felt the need to provide support on something he understood was important to his wife.

Charles Charles, April’s spouse was absent from her quotes, except in the final chapter. Even when inquiries were made specifically about his feelings in relation to the pregnancy April would return to Charles’ family history (adopted) never referring to any statements made by him on the subject. It was therefore difficult to ascertain Charles’ role in relation to the pregnancy or the marriage; his voice was missing from her accounts. Although April did not express any problems in their relationship, his behavior and departure shortly following their loss, suggested that there were issues, perhaps unbeknownst to her. April’s response to his leaving suggested that his behavior was unexpected and left her feeling quite devastated. Charles’ voice, as conveyed through his wife’s accounts seemed nulland-void. His actions finally spoke volumes in the end and interestingly seemed to match his role in the relationship, not there.

Jason Jason’s behavior was increasingly confusing and unsettling to Linda. The relationship went from happily planning for their second child to feeling betrayed and bewildered by her husband’s behavior. She described her husband as increasingly detached. “I thought he was sick or something,” but finally allowed herself to face his infidelity. The person who was such a source of support had become unavailable at a time when she needed his support, especially around challenges she was facing at work. Linda’s recollections were not on the paternal role in relation to the pregnancy, but rather his role in their marriage. Jason was perceived by Linda as preoccupied and emotionally unavailable.

72 Chapter 4

Clay Wileta’s husband used words which were puzzling as she described his reaction to their infant loss: “eager,” “confident,” and “protective.” I contemplated these words while reviewing the transcript, believing that they held meaning. It was the manner is which Wileta shared his reaction; she wanted to recall his exact words. These words probably make more sense in the context of his work, a producer who had several projects occurring simultaneously, and Wileta being at the center of an important recording project. The disappointing reaction to learning that his wife was pregnant was later underscored by Wileta’s account of the contrast in the responses made by her co-workers, “They were happy and very supportive, not like my husband.” There was another account recalled by Wileta that I found especially revealing in tone: “I remember the day after I lost the baby. I remember going alone to the parent-teacher night because there was serious stuff going on at school with my son. I was alone.” Wileta placed emphasis on the word “alone” probably revealing discontent in Clay’s lack of sensitivity in relation to her loss and now in dealing with another emotionally charged event. The pregnancy was probably illtimed from Clay’s point of view who was preoccupied with job related pursuits. The pregnancy was an unexpected interruption. He was probably “eager” to have Wileta now refocused on the work and “confident” that things would return as they were; and they did. She immediately fell in lock- step with Clay after her the loss. “I was like ok, let’s move on.”

Frank Tina talked about issues centering on infidelity and feelings of discontent, which were front and center in her mind in relation to her husband. She admitted that her own state of mind probably added to her confusion and anger. “I was not sure yet what I should do. I was just going through the motions.” It is interesting however, that Tina’s husband recognized she was pregnant early, “before I thought about it.” As she reflected on this she realized that his interest in her was probably more than she was able to see at the time. There was a sense that her husband was “present,” and she wanted him there, but her psychological state interfered with her ability to confidently assess the situation. “I was in a weird place.” A general sense of sadness emerged in relation to her husband and her own life during her pregnancy.

Phil In Alana’s case, the degree of dysfunction between her and her husband was obvious from the beginning of her pregnancy except for brief periods when he agreed to accompany her to the doctor to seek an abortion, and shortly following her emergency intervention. Most times he was absent,

Fathers and Pregnancy Involvement 73

with an ever lurking presence in the background which was both threatening and unpredictable. The heaviness of the weight she carries in relation to Phil’s influence and the harm inflicted remains in Alana’s voice. She admits that she is still in a process of healing.

Eric Eric’s role throughout the pregnancy can be best described as “there.” Freddie described his excitement about learning about her pregnancy and they had what appeared to be a close relationship, with Eric focusing on establishing the new home for his family and being very present during his wife’s emergency. Eric’s voice was one that was supportive, calm, and consistent.

Examining Paternal Factors Marriage and Relationship Issues with Spouse The women in this study were co-habiting with their respective spouse during the entire pregnancy, with the exception of Dorothy and Derrick due to immigration procedures. Alana and Phil separated during the early phase of pregnancy as the result of issues stemming from abuse. The average length of time married for all couples was four years. The majority of women (six) spoke of problematic issues of varying degrees in their relationships with their respective spouses. It is interesting that most of the women did not identify relationship issues as a source of stress. However, the impact of their words, and attitude said otherwise. The women described problems in their relationship extending throughout their pregnancy and for some throughout their marriage. It should be noted that problematic issues in a marriage did not preclude emotional support from a spouse, in this case in relation to a pregnancy. It is clear that a pregnancy exasperates stress responses to many aspects of life; most formidably the relationship between husband and wife.5 The majority of women in this study shared a range of difficulties with their respective spouses from infidelity and abuse to communication issues. The descriptions below show the range of difficulties and the women’s accounts expose feelings of disappointment, confusion, sadness and anger. Alana described the length of her abusive relationship with spouse, and living through the constant cycle of abuse: At this point we were, I would say late in the relationship we had been together for a long time, and the abuse had started maybe the second year, and we’re

74 Chapter 4 talking about being at the eighth year now or the seventh year of abuse in our marriage.

For Tina there were clear symptoms of depression, which went untreated and likely intensified relationship issues with her husband. Everyone thought that we were the perfect couple. They expected us to have kids and live happily ever after. I felt we put up that façade for the sake of the family. I don’t know if my husband thought or believed it, but I didn’t. Most times I did not know what my husband thought. He (husband) was fooling around and I didn’t know if I wanted to work at the relationship anymore.

Linda reflects that perhaps she could not bear to face her husband’s infidelity during her pregnancy but knew all along: It was some time after that I found out that he was having an affair. I am not sure if that had crossed my mind during the pregnancy. Maybe it did, I don‘t know. Maybe I knew that I could not bear knowing that at the time.

Wileta described her husband’s reaction to her pregnancy as confusing and upsetting: “He can be very laid back, too laid back. It gets frustrating. It is hard to get him to show emotions, and when he does, it’s sometimes confusing. It’s tiring.” She later shared that his communication style was a consistent source of frustration for her. April explained that issues with Charles (her husband) became evident after their loss, as she described him as becoming “disconnected” and “short tempered.” However, it is suspected that problems existed in their relationship prior to their loss: Yeah, it got really hard after that I think for him. When it came time to pick me up at the hospital or to visit me, he really didn’t visit that much. It was okay umm, he came to visit and then it was okay I got to go see so-and-so about some business, or he would sit and watch the basketball game and we really didn’t talk that much then. I was worried, because I’m wanting to hug and cuddle and he seemed distant, and he was like I don’t want to hug you cause I don’t want to hurt you; I don’t want to touch your staples. And that was like the beginning. When it came time to pick me up from the hospital, I am calling and he was not home, he’s spent the night out hanging with friends or somewhere else, and I’m asking ‘what’s going on?’

April continues to give her reasons for her husband’s behavior: What I learned in retrospect, you know once again being without parents he’s accustomed to older people, cause his parents were older people, who adopted him; so he spent the night going over his frustrations with one of the older gentlemen in the neighborhood whom he counted on when he was frustrated, or mad, or whatever.

Fathers and Pregnancy Involvement 75

Yvonne shared that the weight of communication problems experienced throughout the marriage became heavier after the loss: My husband is not the type of person to just open up and say okay let’s talk, let’s just let it all out. I have to be the initiator. And even when I’m the initiator it still isn’t to the extent that I need. Umm, of course he tries to make it all better, but it’s just not the same as what I’m looking for. This has always been a problem for us.

A woman’s marital status is an important factor in birth outcomes, as it may be an indicator of the presence or absence of emotional, social, and financial support during a pregnancy as demonstrated in the above quotes.6 However, as with other demographic variables, marriage may afford some groups of women more protection than others. Nevertheless, the degree to which a spouse is present and provides emotional support is a protective factor in preventing adverse pregnancy outcomes.

Paternal Family History Implicated in Poor Birth Outcomes It was my spouse who tentatively mentioned the possible link between the adverse pregnancy outcomes in his own family history with the possible link with the pre-term birth of our baby girl that steered me toward an added area for exploration, paternal familial history. For the first time he revealed that his mother suffered an infant loss, and she too was born early and weighed so little that her own life was threatened for several months. I asked, ‘Why did you not share this before?’ His response, “I did not think it was important.” The strength of the relationship between paternal familial history and poor birth-outcomes in this study proved to be important and was an unexpected finding.

Silence Broken The research on the link between paternal familial histories with poor birth outcomes is both scare and contradictory. For example, Esplin et al. (2001) research demonstrated that paternal familial history is indeed implicated in birth outcomes. Researchers were interested in determining if there is an inherited paternal predisposition to preeclampsia (a sudden sharp rise in blood pressure during pregnancy). The findings revealed that the male group, whose mothers had preeclampsia, had a much higher risk of having a child born of pregnancies complicated by preeclampsia, supporting the theory that inherited contributors from both parents are important in the development of the disorder. An important finding in substantiating the important role paternal and maternal heredity plays in pregnancy outcomes. However, later research conducted by Varner (2005) which was a non-epidemiological study

76 Chapter 4

that examined the link between paternal familial history and adverse birth outcomes, revealed negative associations. Although the studies reveal very different findings in relation to the role of paternal histories linked to birth outcomes, in this study the findings suggests a link. Six of the eight fathers in this study had a familial history connected with infant loss. Two of the women could either not confirm their husband’s history, as in April’s case (husband was adopted), or had no reported spousal familial history of pre-term births or infant deaths, as in Wileta’s case. Three of the six women were somewhat surprised to learn about their husband’s family history of premature births and/or infant death only after suffering their loss. The manner in which the women learned of their spouses’ familial history was in their view “secretive.” Such perception does not take into account a broader view, which gives little value to paternal factors related to heredity as possible contributors to poor birth outcomes, reflected in the scarcity of research on the subject. Moreover, the huge gap in what black men know in relation to their role in contributing to healthy pregnancies in general and BIM specifically, as discussed, is a problem in the black community. Therefore what the women were indentifying as “secretive” was probably tentative input by their spouse due to uncertainty surrounding the value of the information, lack of knowledge on the topic, and a culture which places pregnancy in the category of “woman’s business.” Dorothy states, “because of the way you know the culture is it’s not something people necessarily talk about.” Dorothy did not learn about her husband’s family history until Derrick’s mother shared information while trying to console her: And so it wasn’t until I had a problem, that Derek’s mother, in trying to console me, was like well, so-and-so and so-and-so had you know had this problem (speaking about her family members) and so that doesn’t mean it ‘s the end of the road for you.

Yvonne learned about what she called the family “secret” from her father in-law: Yes, my husband’s sister miscarried. She had three boys and I believe, at least what my husband has told me, she miscarried two children. After our loss, my husband’s father who’s very secretive, shared with us that he and his wife miscarried two children. My mom carried twins with me; she lost the other twin, and held me.

Several of the women shared similar accounts, all being aware of their own familial histories, but having less than complete information about their spouse’s familial history in relation to birth outcomes. For example, Linda was surprised to learn of her husband’s family history:

Fathers and Pregnancy Involvement 77 My mother lost an infant, and my husband’s mother was a preemie, and her mother loss an infant. I didn’t know anything about my husband’s history until he brought it up one day. I don’t remember what we were talking about.

Alana’s family history and that of her husband’s included several poor birth outcomes: My father’s mother, when she was my age had twins that didn’t survive; and my last daughter came two weeks early and she was considered premature. She came out a month early actually she was supposed to come in April and she came in March. My husband’s mother and sister had premature births, both resulting in deaths.

Emotional Support In this study five out of the eight women described feeling emotionally supported by their spouse during pregnancy, despite for some, the presence of marital problems. The findings also reveal a correlation between unplanned pregnancy (three) and lack of emotional support. The women shared various reasons for not feeling supported by their respective spouses which usually reflected problems in their marriage. For example, Alana recalled that although her husband agreed that they should not go through with the abortion, the pattern of neglect and emotional abuse emerged again: With the twins during the pregnancy it was more mental abuse; just not knowing what to expect. Financially, you know, it was hard. I could not depend on him; it just became very hard. I felt anxious much of the time.

Wileta seemed baffled by her husband’s response to her pregnancy, which she had difficulty describing: I can’t say I felt supported by my husband. He had a strange reaction to the news. He wasn’t excited, he wasn’t upset, he was like okay good. And that was it.

Wileta later admitted that husband’s communication style was a source of great discontent, and she viewed it as a problem in their marriage. Tina was sad and uncertain, “He was not a talker; he had another life going on. I was just going through the motions, not sure yet what I should do.” The inquiry on “emotional support” was open-ended lacking specificity on what the women would consider constituting emotional support. It was presumed that spouses’ willingness to make adjustments in various areas to reduce the burdens on his wife, avoid conflict, being “present” during key

78 Chapter 4

times and making clear expressions of concern were all presumed to represent examples in the service of emotional support. It is interesting that none of the women was accompanied by their spouse for pre-natal care visits. “My husband was at work” was the explanation provided in every case, but it was also observed that there were no expectations for their husbands to accompany them to the visits. Perhaps this was viewed as “women’s business.” Additionally, as all of the women stated, there were very little adjustments made in domestic tasks, including child care responsibilities while pregnant, and the women continued to work fulltime. Nevertheless, as mentioned, the majority of the women felt supported by their spouse revealing perhaps more about their own expectation of self.

Father’s Role: A Modifiable Factor Emotionally connecting with an unborn baby is not something that is inherently natural for fathers. The father’s experience with his unborn baby is very different from the natural connection that occurs between mother and fetus. Neonatologist and researcher Carlo Bellieni states, “During its gestation the fetus is already a member of the family and company for the mother even before being born,” but not company for the father. The father’s experience is more vicarious, depending on the mother for inclusion into the private space between mother and fetus. Because of the nature of the relationship between mother and fetus, the assumption is that fathers have little interest in the pregnancy stage, as revealed in Yvonne’s opening quotation to this chapter. In this study, the assumption that fathers have little interest in the pregnancy was evidenced in the role assumed or assigned to them. There appeared to be a silent agreement to keep the pregnancy in the domain of “women’s business,” and as such spouses were somewhat detached from the different and growing needs of their pregnant wives. As a consequence, there were no new expectations made by the women upon their spouse during pregnancy around the reduction of domestic or child-care related chores, or expectations around fathers accompanying women to pre-natal visits, etc. A pregnancy could act as the catalyst for change in such areas, but for the most part such changes did not occur during this pregnancy. Therefore, it is assumed that the peripheral position observed of the fathers in relation to the pregnancy was mostly a function of culture, with both women and men doing very little to interject change. This is an important issue, as it points to missed opportunities for increased paternal involvement. As discussed in chapter 2, considerable research findings link maternal familial histories, which include infant mortality and LBW with increased risks for poor birth outcomes. The strength of the findings of both maternal and paternal familial histories attached to adverse birth outcomes for the

Fathers and Pregnancy Involvement 79

women in this study suggests that they were at high risk for the pregnancy outcomes they experienced. The question is: would being forewarned about their risks enable them to reduce the chances of a poor birth outcome?

Notes 1. Roberta L. Coles and Charles Green, eds., The Myth of the Missing Father (Columbia University Press, New York, 2010), 6-8. 2. Deanna L. Pagninni and Nancy E. Reichman, “Psychosocial Factors and the Timing of Prenatal Among in Jersey’s Health Start Program,” Family Planning Perspectives 32, no. 2 (March/April 2000): 60. 3. James A. Gaudino and Bill Jenkins, “Fathers’ Names: A Risk Factor for Infant Mortality in the State of Georgia, USA,” Social Science & Medicine 48 (1999): 253265. 4. Nancy E. Reichman and Julian O. Teitler, “Paternal Age as a Risk Factor for Low Birth Weight,” American Journal of Public Health 96, no. 5 (2006): 862-866. 5. Vijaya Hogan and Cynthia Ferre, “The Social Context of Pregnancy for African-American Women: Implications for the Study and Prevention of Adverse Perinatal Outcomes,” Maternal and Child Health Journal 5, no. 2 (2001): 67-69. 6. Pagninni and Reichman, “Psychosocial Factors,” 60.

CHAPTER 5

Precipitating Causes: Breaking Point Tina I had just returned from St. Louis the night before. The flight was bumpy, and I really was not feeling that great after landing in St. Lou. I remember telling my sister that I was not feeling well and I wondered if I should have taken a plane. I heard so much stuff about airplane travel during certain times in your pregnancy. Anyway, I didn’t feel well for the entire three days. I went through the motions. I was extremely tired and had no appetite. I remember that morning, after coming back I started feeling slight cramps and called my doctor. By the time he called me back I felt fine. I took it easy for the entire day and I did not have any cramps. I was getting ready for bed around 9:00 pm and it was 12:25 when I came to in the E.R. There was a clock right in front of me on the wall in the hospital. I was told that it took sometime for the ambulance to arrive and I think we were waiting on my doctor, I am not really sure.

Precipitating Events Associated with Infant Loss It is important to reflect on where we started in these pregnancy stories, so not to attribute the events discussed in this chapter as the sole explanation for infant loss. In this chapter, we focus on the consequence of one external event that the women encountered which severely compromised their body’s capacity to handle, resulting in a breaking point. 1 As the inquires in this research followed the stages of pregnancy progression, what became increasingly apparent, as in other phenomena, was the coming together of clusters of factors creating strong conditions for a medi-

82 Chapter 5

cal episode/crisis. The accounts of the women in this chapter reveal the events that they believed were a major contributing factor in their breaking point, resulting in pregnancy loss. Six out of the eight women reported what is labeled a precipitating event. The degree to which the women in this study experienced precipitating events was an unexpected finding. Unlike warning signs, precipitating events were external and situational, occurring once and close to the time of infant loss, sometimes immediately prior to infant loss. The events were often accompanied by severe pain, and extreme fatigue, which in some cases subsided. It is interesting that the women did not always report these events to their doctors, but in many cases recalled the events as pivotal to their pregnancy loss. Little research links a single precipitating event to preterm birth, except in cases of unintentional accidents to the mother and fetus (rated five as leading cause of death for all infants).2 An exception is Misra’s research (1998), which examined the effects of physical activity on preterm birth. Findings demonstrated a positive link between excessive exercise and poor birth outcomes. For the six women in this study reporting precipitating events, a majority (five) were involved in excessive physical activity, and several (three) were simultaneously involved in significant exposure to large public places, and two to air travel.

Precipitating Events Recalled Dorothy’s precipitating event occurred about one week prior to being placed on bed rest for two weeks, which was followed by hospitalization as a high-risk patient. She did not share her experience (the horrible pain) with her doctor at the time of the event, as in her view it was a one-time occurrence and the pain associated with the event did not return: Around my fifteenth–sixteenth week I had gone to New Orleans with my sister. She was going to a conference and I just wanted to take a few days off, so I just went with her. We have been to New Orleans several times. So while she was at the conference, I said well let me walk and do some stuff, and there was one particular day that I decided to walk from one particular end of, you know not Canal Street, one of those streets, to the other end. But you know stopping along the way, doing this, doing that, and coming back I almost couldn’t walk. I started getting this really severe pain. So I thought you know, you don’t walk like this on a regular basis, so why did you just start doing that now, the pain was just like something I had never experienced in my life, it was so excruciating literally I couldn’t walk. I literally had to walk a little bit and stop, and I force myself to get back to the hotel. I just thought I overdid it, because I didn’t walk like that on a normal regular basis, so I took some Tylenol I laid down; the next day, completely gone, completely gone. So again I’m just

Precipitating Causes 83 thinking this is not a big deal. I did not tell my doctor about this episode. I mean I think that in the immediate aftermath you know you go through this phase thinking what I could have done differently, you know maybe if I had told her (doctor) about the pain incident earlier things would have changed. When I look back I think this was really the turning point.

Freddie was told by her doctor to go to the ER due to cramps experienced twelve hours after an exhausting day which also included her night shift at work: The day the baby came, I went to a baseball game, because I had out-of-town guests and we were all hanging out. I did a lot of walking. I believe I overdid it. During the game I was fine, but my back was hurting a lot. After the game I went to work (work nights) my back was still hurting much more severe now and I was extremely tired. When I got home I was cramping and I took extra strength Tylenol. It felt like severe menstrual cramps. I called my doctor’s office and was told to get to the ER immediately. I started to cry, I felt this was not right. The contractions would hit me—boom! Then stop. I was at this point six months pregnant.

In Alana’s case, her precipitating event resulted in immediate hospitalization. She describes the event and the subsequent medical interventions: I was taking my vitamins and I’m doing good. I can get around, I do my shopping, and I was feeling fine until one day the elevator in my building broke and I lived on the eighth floor. I was twenty weeks pregnant at this point. I walked up, still feeling fine; carrying twins I thought I was fine. Well if I take it slow I’ll be okay, and I did the eight flights. So later that night I started contracting and one of my family members took me to the hospital, and I was told that I was dilated half a centimeter so I would have to be hospitalized. I think that walk up the stairs did it, because I was fine before that.

Yvonne tentatively linked an argument with her husband to her infant loss: I remember having this very, very heated argument with my husband. That was shortly before things happened (the loss). And I was saying to him, ‘you know why you are arguing with me? You know, you’re not pregnant; you could cause me a lot of stress and cause me to have the baby now!’ To this day I don’t remember what we were arguing about. But because I was so just emotional, maybe overwhelmed that day, I don’t remember. Yes. And it was so severe to me, because I remember feeling very, very stressed out. I asked him (doctor) if an argument, or me being extremely on edged could have caused this to happen (infant loss). I asked him that because, you know when you’re pregnant, you’re hormonal, you’re emotional, and you may say things that cause arguments, which affect the pregnancy. I really don’t remember how he answered, but I was not satisfied.

84 Chapter 5

There is no etiology attached to these causes of precipitating cause, they are simply participatory occurrences resulting in unforeseen consequences. Thus, this is an area associated with poor-birth outcomes within the women’s realm of control. This is especially true if the women are aware of the kind of activities that could put them at risk for infant loss. The fact that the reasons for preterm births are unknown, and it being the number one cause of IM for black women with the difference between black and white pre-term related births hovering around 54 percent the connection between precipitating events and pregnancy loss is an important finding, as such events are avoidable risks for women and within the realm of their control.

Blame Associated with Precipitating Causes Blame is usually connected to the grieving process, but this was not the case in this study as there was considerable time between the loss and participation in this study for the majority of women. Instead feelings of blame were linked to the precipitating cause, and therefore are discussed here. The reason for this may reflect the women’s freedom to decide whether to participate in the precipitating event, and they tended to blame themselves for that decision, “I over did it.” The blame had a self-attribution of responsibility quality specific to this single factor, precipitating cause. Blame as a theme surfaced as the majority of women reflected on the events that unexpectedly seemed to change their birth outcome. The majority of the women who experienced a precipitating event often reflected on their responses and decisions in relation to the events. They each posed questions as to whether their pregnancy outcomes would have turned out differently if they had taken different actions. For some there was anger attached to a genuine need to place their loss in a framework that provided some explanation; even at the risk of blaming themselves.

Unresolved Feelings of Blame This issue (blame) if unresolved could interfere with emotional healing and subsequent pregnancies (discussed in chapter 6). It is interesting that most of the women reported never discussing their feelings in relation to blame prior to this interview, except for Linda who blamed her doctor for bad medical advice. However, Linda later revealed, “feeling guilty” about her lack of wellness during her pregnancy, casting a degree of blame onto herself, and revealing not sharing this with anyone until now interview. Other secrets surfaced as the women discussed the issue of blame. Therefore, the

Precipitating Causes 85

finding here not only relates to blame, but also reveals secrets which were held by women in relation to their pregnancy loss. In Yvonne’s case, blame, as mentioned, was attached to her husband. It first surfaced with a tentative question to her doctor about a heated argument she had with Kevin. She blamed him for the argument as revealed in her account in the preceding section. Yvonne later revealed some suspicion about his use of medication as a possible contributing factor. At this point Yvonne is searching for an explanation: Umm, well one thought that I have had, I know they says there’s nothing that you can do, or have done. But I just wonder if there are things that you could do you know health wise. Naturally if you’re a person that has high blood pressure as many of us do, and are take high blood pressure pills on a regular basis.

Yvonne continues, as she explains why it is important to understand what happened: It just seems like there has to be a reason that it happens, it just doesn’t happen out of a vacuum. Why this infant didn’t survive. So I’m wondering if maybe there is something we can do, maybe to prevent this from happening again.

Dorothy’s blame was more self-directed as she mulled over what could have happened if she had made a different decision about sharing the precipitating event with her doctor: I thought about whether, you know maybe I should have talked to her (doctor) earlier in telling her about the pain, because I still don’t know, you know I don’t know if that had anything to do with it or not. In retrospect I wonder if that was the start of the problem, but I don’t know, I mean there’s no way to look back and know. I didn’t have any complaints, other than that, and I didn’t come back running to her saying ‘oh you know something happened’ and it’s funny because I think about patients that have come to me saying you know two weeks ago I had this severe excruciating pain, what was that? And I’m like well number one it was two weeks ago so like how can I tell you what it was two weeks ago? I mean I could have called her, as soon as I came back. I could have called her office and said you know I was walking a lot, and I had this excruciating pain. But, we are creatures of human nature, as we address it when it’s a problem. So I didn’t.

Alana, Dorothy, and Freddie used similar language in talking about what happened, “I overdid it,” again are suggesting that their actions resulted in the poor birth outcomes. Linda blamed her doctor for giving her bad advice, but she also shared feelings of guilt about not taking better care of herself:

86 Chapter 5 She instructed me to take milk of magnesia and to lay on my right side, which I found out later, was the worst thing I could have done. I stopped drinking socially. I don’t think I made other changes. I forced myself to exercise a little. I did not pay close attention to me as I did during my first pregnancy. Throughout I was feeling guilty that I was not in the kind of shape I was in for my first pregnancy, so I was trying to eat healthy. My husband and I use to work out together. After the birth of our son, I never seemed to have the energy or the time. Now I was feeling that this was partly the cause [of the loss].

These accounts around blame hold significant importance in relation to the women's feelings about subsequent pregnancies. For example, as of the writing of this study, Yvonne has put off plans for a subsequent pregnancy recognizing the existence of unresolved issues. She talked about not getting a clear cause and effect explanation for her pregnancy loss, heightening anxiety around having another baby.

The Bough Breaks “Each of us is at risk for dozens of conditions, which we will either experience or not, as a result of the combination of risk factors we have inherited, and whether or not we encounter the environmental trigger that sets the disease process in motion.” Francis S. Collins (2010) Precipitating causes/events associated with poor-birth outcomes are within the women’s realm of control. This is especially true if they are aware of the kind of activities that could put them at risk. For example, Alana actually experienced the precipitating cause while being on restricted activity as per her doctor’s instruction. The realities of life, climbing up eight flights of stairs to her apartment due to a broken elevator, resulted in an emergency hospitalization by the end of the evening. This may reveal a larger issue as noted in Alana’s account. Her doctor only explained that she was ‘carrying low’ because her muscles were relaxed due to prior pregnancies, “She just told me to take it easy.” The doctor may have been more concerned about Dorothy’s pregnancy than she revealed to Alana, but the point is that Alana did not seem to appreciate the possible consequences of climbing up eight flights of stairs (precipitating event). This calls attention to the quality and kind of medical information imparted to the patient by the doctor which could help in preventing precipitating causes. Additionally, with knowledge of a short cervix and the possible risks, the probable contraindicated trip and the excessive physical activity Dorothy engaged in while in New Orleans was avoidable.3 Possessing clear information, as the result of more in-depth inquiries and tests probably resulting

Precipitating Causes 87

in a diagnosis and risk assessment could avoid or reduce involvement in precipitation events.

Notes 1. Bruce S. McEwen, “Allostasis and Allostatic Load: Implications for Neuropsychopharmacology,” Neuropsychopharmacology 22, no. 2 (February 2000): 108–124. 2. Sherry L. Murphy, Jiaquan Xu, and Kenneth D. Kochawek, “Deaths Preliminary Data for 2010,” National Vital Statistics Report, January 2012. www.cdc.gov/nchs/data/nvsr/nvsr60/nvsr60_04.pdf (accessed July 2012). 3. Dawn P. Misra, et al., “Effects of Physical Activity on Preterm Birth,” American Journal of Epidemiology 147, no.7 (October 1997): 628-635.

Chapter 6

Reflections on Loss, Healing, and Resiliency: Labor of Love and Sorrow Alana: The Day the Baby Came So I was hospitalized and they put me on all these different, I mean so many drugs to keep me from contracting. Yeah I was contracting on and off for about two weeks. At the end of the second week, I was open a little more, I prayed and said God I can’t it’s up to you I’m ready. If it’s gonna come let it come because I’m tired. And no exaggerations, no medicine they gave me worked I just kept contracting for two weeks. Their heartbeats (unborn twins) were still strong, and they were still moving. They rushed me up to the delivery room and just explained to me the twins’ chance of survival, and they asked me if I wanted to resuscitate them. They asked if I wanted to have a specialist there, the pediatricians there and you know the team and I said of course. My choice was just let them come and you know, so I said we can try. Something in my mind told me all the trying is not going to help. So anyway they took me and the doctor that did the delivery he used an object to enter my cervix and made my water burst. And I mean a water bag for twins, oh my gosh water was just everywhere and I started pushing and I pushed out one, and I think he was stillborn, the first one and the second one came out and I think she breathed for approximately six minutes. You know they worked on her and she was breathing for like six minutes, and then they told me that she didn’t make it. And they wrapped them up and they just brought them over to me.

Alana’s above account describes the events after walking up eight flights of stairs (precipitating event) that resulted in emergency interventions to stop her preterm delivery; she was in the beginning of her third trimester.

90 Chapter 6

The Endings to Pregnancy Stories This research study opened with presenting findings related to the larger context in which the pregnancy began for each woman from the pre-planning to the discovery stages. In this chapter, the women reflected on the events surrounding the end of their pregnancies. Here the research question is, are there unique experiences, feelings, or thoughts explicated by the participants’ reflections on the immediate events surrounding their infant loss, which might add to understanding the adverse birth outcomes for the women in this study? The structure of this chapter is different from the preceding chapters. This chapter is divided into two major sections. The first section, Reflections on the Day of the Event, presents full descriptions of their immediate medical crisis and the emergency interventions. The second section titled, Post Infant Loss, is where the thoughts, feelings and life events are captured as the women focused on their lives after the death of their baby. This part of the chapter is divided into two major sections, aligned with the major themes: 1) the healing process, 2) subsequent pregnancies, and perspectives on their current functioning during the aftermath of their infant loss. A summary of findings follows these sections. The interview question which prompted the sharing of a significant amount of material in this chapter was simply, “I am interested in understanding what happened on the day your loss. How did things unfold?” The women took their stories to completion, wanting to talk about their feelings and events during the aftermath. I immediately understood the significance in this part of their pregnancy journey, but the connections that emerged were quite unexpected. The power of this part of their stories stands alone in the context of a medical emergency; therefore the accounts are lengthy to impart the fullness of the ending pregnancy stories. The responses of their spouses if shared and the medical explanations provided to the women on what happened by their doctors are included to present full accounts of recollections and feelings associated with the event. The women’s reflections (what happened) are shared in their entirety and start below with Yvonne.

Reflections: The Day of the Event Yvonne Yvonne contacted her doctor to inform him that she was spotting and cramping. He instructed her to go to the hospital. She was in her second trimester:

Reflections on Loss, Healing, and Resiliency 91 And I was here (home) with the kids by myself, so I had to call my husband and by that point so much time had lapsed. I think if anymore time had passed I would have delivered the baby here at the house. He came back home, we dressed the kids went to the hospital; it was before I left this house that I was bleeding. So I knew right then and there that something was terribly wrong. So we went to the hospital. They told me to go put on my gown. I put on my gown. She said, “I’ll be back to examine you,” and I told her that I have to go to the bathroom first. So I went to the bathroom and as I’m getting up I felt pressure, and I had my baby shortly after. Meanwhile, I’m of course crying hysterically and my husband came hours later, because we had to find someone to take care of the kids; everybody’s working so my father-in-law came. So that was the horrible, horrible. My cervix wasn’t closing so they just wanted to do a DNC just to make sure everything was out.

Response of Spouse: On our way to the hospital you know he was crying, and I had to be strong for him. And I said you know I’ m gonna leave you have to be with these kids so you need to get it together. Umm, but he was very, very umm, surprisingly distraught. And I say surprisingly because you know, as women we’re carrying that baby so naturally we’re going to be in distress. And you don’t think that men, connect with the babies as your carrying them. He was definitely connected with this pregnancy and that baby. Umm, my Mom even told me that he cried with her on the phone.

Doctor’s Explanation: He was very, very, very empathetic. He was very comforting. He was a male, part of the practice. Again, one that I didn’t really know very well, umm and he said that there’s nothing that I could have done to cause it, there’s nothing I could have done to prevent it, it happens more than I think, I think the numbers were one out of four pregnancies, this was my third, it’s not uncommon. It doesn’t mean, he said, it doesn’t mean that there was something wrong with it [baby], but basically there’s nothing that I could’ve done. Meaning, I didn’t do anything physically to impact the loss of the baby.

Yvonne’s Thoughts on What Happened: I’ve asked myself that question so many times. I honestly, I think that this particular baby, something was wrong with it, something was developmentally wrong with it or I don’t know. Something was wrong with my egg, or my husband’s sperm that created this little guy who couldn’t make it. Now why, the heart beating so strong it seems like he was thriving or she was thriving, I don’t know, I don’t know what went wrong. ‘Cause I would think that if there was something wrong it, it wouldn’t have even gotten that far. But you know I’m not a doctor I don’t know. But I do think something was wrong with it. It just seems like there has to be a reason that it happens, it just doesn’t happen

92 Chapter 6 out of a vacuum. Why this infant didn’t survive. So I’m wondering if maybe there is something we can do, maybe to prevent this from happening again.

Dorothy Dorothy was referred to a high-risk doctor following a period of strict bed rest for two weeks, about one week following the precipitating event. She was subsequently transferred to two different hospitals for three to four weeks for progressive care, and was in her twenty-fourth week of pregnancy at the time of delivery: So they took out the stitch, they started to induce me and almost a day later, the next day was Christmas day. It looks like somehow well either well it had to be because according to them the baby was initially with the head down when they tried to induce me. Then the next day when he came, the baby had turned to be in the breech position, and so he was like we can still do a vaginal delivery if you want but there’s risk of what’s called decapitation, because the head is usually bigger so he was basically like do you want to have a Csection? I agreed to have a C-section while crying. So that’s when my son was born, on Christmas day. I mean I did think that I was okay. Umm, my son passed away in July, so that was just like it was a relief. It was a very mixed bag, because he had so many surgeries, and ups and downs and different problems. So you know, on one hand you know you want everything to be successful and for him to get better but you know, at the same time with each set back and I think by five or six months I had had it. I was exhausted, and I was just like how much more can I you know really go through.

Response of Spouse: Well, you know I think that by now Tony had come back (after the birth, baby is in neonatal). Again, it was all crazy because in that time period of me going for this ultrasound and that ultrasound and being hospitalized, he’d gone for his immigration interview and he got approved and he could have left the next day. But you know I said well, because you can’t go over there and say I’m only gonna be here for two years can you give me a job, I said just let them know what’s going on, talk to them, just give them a reasonable time period and then you know try and get back over here. So he was gonna try and work through the end of the year, and January he was gonna come and blah, blah, blah. And for West Africans Christmas time is a very busy time of the year, a lot of West Africans are traveling to their homeland, because they have a lot of cultural celebrations. Once I delivered on Christmas day, it wasn’t like he could just pick up and get on the flight the next day. You know a lot of things get closed down because of the Christian holidays and the Muslim holidays, it’s not like here where you just pick up the phone and there’s just somebody there 24 hours. It just doesn’t work like that, which is difficult for a lot of people to understand. Umm for me because I had experienced it from going there, I knew you know there’s nothing he could do. Umm, but he eventually did come in January, because that was when he could. He returned January 10th

Reflections on Loss, Healing, and Resiliency 93 because that was the earliest flight his brother could get him on to come back. Because many people from here go to West Africa for the holidays, and then they all come. It’s just ridiculous. So that was the earliest time he could come back, so you know he was having his own issues because he wasn’t here maybe if he had come back sooner you know something he could have done something. So whatever, that was a whole other thing.

Doctor’s Explanation: Well looking at it, when I did go for that ultrasound the cervix was short. It’s called an incompetent cervix and the only problem at that point was that the process had already started so the doctor that helped to take care of me he talked to my mother one of the times that she happened to be in the hospital, and at the end of the whole thing he said, “you know there is some information about heredity and incompetent cervix and about six percent of people, it’s not a well defined type of thing just tissue protoplasm strength” blah, blah, blah. So he said that may have been contributing factors, which of course in the traditional way of training actually people don’t really talk about that as being a significant factor for other women delivering pre-term. So it’s not something that you really focus on, or is documented very well in the literature.

Dorothy’s Thoughts on What Happened: Well I think if what the doctor is saying is true, in my case, umm that would be a contributing factor. Because I can only look back now and think, was that when everything started? [She is referring to the pressure she was experiencing that required her to sit or hold her stomach up]. In my mind at that time, I just attributed it to the normal wear and tear, yeah. I think the episode in New Orleans, and in looking back there were things happening which I was not paying attention to, or just not giving value. Well you know I think that before that time you interact with a lot of people I interact with a lot of people, a lot of physicians. And I can very easily see how women are just hard-pressed to find somebody to really listen to them. It’s a difficult situation because I understand it from the doctor’s point of view and I also understand it from the patients’ point of view. But an older physician also told me that sometimes you just have to listen to the patient. You have to forget about defiance and you just have to listen to the patient. I don’t really know if it’s going to help, but you know the problem with physicians is, most of us are coming into this as adults. You can teach people book knowledge, but I can’t teach you how to be a kind human being, how to be a nice human being. When you came out of medical school, you either were or you weren’t.

Wileta Wileta’s description is the shortest, which is consistent with her style of communication throughout, and probably reflects a degree of discomfort in feeling relief. The words used to describe husband’s response are interesting. Wileta was at the end of her second trimester:

94 Chapter 6 When it actually happened I knew what was happening because I knew that I was losing the baby, but when it actually happened it was very emotionally draining and I was quite devastated. I had called my doctor from my job. I called my doctor and my husband from the job and I went straight to the hospital from there, so Clay [husband] wasn’t with me. He was actually working when this was actually happening. He (doctor) told me to go straight to the hospital, when I told him what was going on (bleeding) because I had gone to work that day, and he told me to go straight there (ER).

Response of Spouse: My husband he was very eager about it, very confident about it, very protective about it.

Doctor’s Response: The next time I saw him he asked me how I was feeling, and gave me the statistics again, and said don’t worry about it, this does happen and it doesn’t mean you cannot have another baby. And that was really it.

Wileta’s Thoughts on What Happened: I don’t really understand why it happened. I don’t think something happened. I just think the baby was not forming correctly and that my body knew it.

Freddie Freddie was told by her doctor to go to the emergency room after experiencing cramping. It was about twelve hours after a day of exhausting events, including work. Her quote continues from a prior description where she talked about her poor treatment, which she attributed to race, cited in chapter 2. She was at the beginning of her third trimester: That same doctor examines me and the pain is excruciating. I don’t want him to touch me. A black female intern comes into the examining room and she sees that I am extremely upset and in between my tears I share some of my story. She was the first person during that time that was responsive. She told me that she was going to find a doctor. By this time Eric (husband) left the room to call my medical group again. Now I am starting to bleed more. The blood is really red. Shortly after this I was taken down for an ultra sound. The lady performing this test said nothing. I could tell by her response that something was wrong. Eric was looking at the ultra sound and he said, “Freddie. I think it is OK.” By this time more than five hours lapsed and the intern now performed an internal examination. Right after that my water broke and gushed out—it was mostly clear with a little red. My doctor finally appeared and clearly upset by all that had happened. She took over. “I need to do a D and C.”

Reflections on Loss, Healing, and Resiliency 95 I’d been there since 5:00 pm and it is now 10:30 pm. All I kept thinking was “What have I done to deserve this?” The procedure was done and I remained in the recovery room for some time.

Response of Spouse: We were both so exhausted by the end of all this. He was mad as hell. You know, the way things went. That was something to distract him from his grief. I know he was feeling terrible about the whole thing. He really did not want to immediately talk about it. We both needed rest.

Doctor’s Explanation: She only said that sometimes these things happen and said I should be able to have children in the future. She was right.

Freddie’s Thoughts on What happened: Maybe it was something physical. I know that I have a tilted uterus. So does my mother. My doctor does not feel that this is a problem. I think I was also too thin.

Tina Tina collapsed within twelve hours after returning from St. Louis. She continues her description from chapter 5 on what happened below. She was near the end of her second trimester: Shortly after I came to I started vomiting and having sharp pains, cramps. By then my doctor was there and examined me. He told me that I had dilated quite a bit and he would have to deliver the baby. He told me that my water broke, but I didn’t feel when that happened. I was crying. I knew the baby was not going to survive. I was just in my sixth month. They were trying to stop delivery, but I knew it wasn’t going to work. I was crying. I knew the baby was not going to survive. I felt terrible. You know I was thinking about what I, I thought of doing earlier an (abortion) and feeling like this was my punishment. I really don’t understand why it happened. I do know that the pregnancy was different and I often worried how I was going to make it through the full term if things did not change and there did not seem to be a change in sight. I just kept thinking about what I was considering earlier on and felt really, really bad about that.

Response of spouse: My husband was there and was really, really upset. He didn’t talk much about it. I could tell that he was upset.

96 Chapter 6

Doctor’s Explanation: He said that there wasn’t anything that I did wrong. He said sometimes it happens, and he told me the stats, which I do not remember.

Tina’s Thoughts on What Happened: I do believe that my trip had something to do with it; I mean things rapidly fell apart right after I got back. But I also think that the timing was not good. I mean there was a lot of internal stuff going on with me at the time. God has a

way of working things out.

Linda Linda called her doctor because she was experiencing cramps. She explains what happened following her doctor’s instructions to take milk of magnesia. She was six months pregnant: So I did what she instructed me to do and woke up about two and a half hours later to cramps that were more intense. I called her again. This time she told me to go to the ER. It only took a few minutes to get there and we were placed in a room and waited for about thirty minutes before being seen by a doctor. At this point I was six months pregnant and everyone was concern about the infant being able to survive outside of the womb so they attempted to stop premature labor. I was scared. I started to cry uncontrollably. This nurse who was with me the whole time said, “Linda. You must try to gain control of your emotions because it can really create more problems.” I really tried to pull myself together. I can hear her voice in my head now. It really gave me strength. They waited for about thirty minutes before they examined me again. After that examination I felt my water break and the doctor explained that they would have to deliver the baby. He told my husband to put on a hospital gown and to follow us in now! We were not even in the section of the hospital where they normally deliver babies. It seemed like at the moment they wheeled me into that room the baby came out. The baby just gushed out and I felt my heart break. I was praying that maybe she would live. At that point my doctor arrived to clean me up, and to make her money. I could have done without her. She (baby) was just too small and struggled for life for seven days.

Doctor’s Explanation: She never expressed anything to me about my loss. To tell you the truth I wondered if she remembered me and the circumstances when I went to see her for a follow-up. Maybe she felt bad about it and did not how to deal with it. Ha, I don’t see her anymore.

Linda’s Thoughts on What Happened: Looking back I think I had a lot on my mind. I also wonder if I was going to be able to physically carry the baby to term; feeling so terrible most of the time. I

Reflections on Loss, Healing, and Resiliency 97 really don’t know, I don’t understand what happened. I just felt burdened with a lot at the time.

April April was examined by her mid-wife who instructed her to meet her colleague at the emergency room after coming in due to severe pain. April is not clear about exactly what was happening, but understood the urgency. She was in her second trimester: I arrive at the ER and she is waiting for me [other mid-wife]. So they wheeled me in a small room where I am examined, and there’s about four or five other people in there, and the doctor is like okay strap her IV up and do this for her, and so I’m like what’s going on here? And the doctor’s like okay great and they are again kind of like ignoring me. He finally tells me that they have to do an emergency procedure. He explains that the baby is in distress. He will talk with me after the procedure. Everything will be alright because they were going to take good care of me. He says that I should relax now we’ll talk. He asked me to start counting down from ninety-nine. That was the last thing I remembered. So I wake up in this room, and there’s maybe other people around my bed, so from what I’m understanding it’s an observation room and umm, I’m like okay why am I here? Someone comes to check on me and they’re like how are you feeling? How’s your pain? I’m like well I’m not in pain right now, but what’s going on? Later maybe hours later, I think I fell asleep and slept for I don’t know how long, the doctor finally came around and again I’m gone here, I really can’t recall what he said. I don’t remember anyone telling me I had an abdominal pregnancy. I don’t remember anyone telling me I had surgery. I think somehow the conversation must have been wah-wah-wah-wah-wah, the end result was I figured out I didn’t have a baby anymore, but I couldn’t hear it. I don’t remember in all honesty, I don’t remember anyone saying to me, “We had to take the baby,” because of any situation, I don’t remember. So when I eventually got out and went to see the doctor, then she explained the baby somehow, don’t know how, because we saw it in the womb, we saw it when we did the ultra-sound. How did it now get situated outside the wound?

Doctor’s Explanation: We saw this baby forming; there should not have been any problems or complications at all. I’m at her office for visits and we are looking at the fetus every time. I don’t think that she (mid-wife) thought anything was wrong either. She tried to be comforting, but I could tell that this situation was upsetting to her.

98 Chapter 6

Response of Spouse: The relationship became very strained afterwards. I was touchy, and sensitive, and accusing him of anything. I don’t know it just seemed like we had, before that I couldn’t remember an argument, but then it’s like we couldn’t say the right things. There was no real good conversation without some part of it becoming an argument for one or the other; someone seeing or hearing something and taking it the wrong way. So it got a little hairy. I think umm, I don’t know all I can imagine now is that it was subconscious, because I don’t think we talked about me losing the baby. I’m sure that we did not talk about that. Our marriage ended less than a year after the death of the baby.

April’s Thoughts on What Happened: I think it was a result of my abrupt and extreme movement, which just caused something weird to happen, that rarely happens. Everything was really fine before that.

Alana Alana’s account of events opened this chapter. Several immediate family members surrounded her at the time of her medical emergency. She was twenty-five weeks into her pregnancy:

Doctor’s Explanation: The weight of the babies, sometimes the uterus can’t hold their weight especially after having other children. She made it seem like “it happens,” not like something was wrong or stress or you know nothing like that. It was more like sometimes your muscles can’t hold that weight.

Alana’s Thoughts on What Happened: I think that walk up the stairs did it, because I was fine before that. It’s not my only thought, I’m really into my spirituality and I understand that things happen for a reason. They (twins) made a strong impression; they made a stronger impression not being here than being here. Hold on one second. (Pause) Yeah, but they made a strong impression not being here. With the documentary and people coming to me and telling me their stories, they made an impression, that’s how I feel about it; they did what they needed to do.

Post-Infant Loss There is significant research which focuses on grieving and subsequent parenting following the death of one’s infant. For example, research conducted by Price (2008) focused on “reproductive loss” and subsequent parenting,

Reflections on Loss, Healing, and Resiliency 99

and then recommended four worker-initiated dialogues for integration into social work practice. Van (2001) interviewed ten African-American women to explore their pregnancy related experiences after pregnancy loss, to describe the strategies these women used for emotionally healing after pregnancy loss, and the implications for professional interventions. Morton (1996) also interviewed twenty-two women (two African-American) to examine the psychological effects of perinatal loss on subsequent pregnancies, the experience of loss on subsequent parenthood, and on life beyond the subsequent child with implications for treatment. It is interesting that the literature demonstrates a link between prior pregnancy loss and an increased rate of IM in a subsequent pregnancy, an area of Morton’s (1996) research. What makes this research particularly pertinent to this study is the fact that black women with a prior LBW are almost four times more likely to give birth to another LBW infant. 1 This raises questions about the connection between birth-related anxieties due to prior infant loss, which we now understand to be a stress producer, with this type of stress being linked to poor birth outcomes. In other words, are the women so worried about having another unsuccessful birth that the stress responses lead to very real birth consequences? Interestingly, out of the eight women in this study the overwhelming majority of them (six) had full-term successful births prior to experiencing a poor birth outcome, and all who had subsequent births carried their pregnancy to it’s full terms, which is not consistent with the literature. However, the material that emerged as the women talked about the time following the death of their baby corroborates much of the research findings on the subject, including those cited above. In this final section, the pregnancy stories of the eight women include themes which emerged attached to the post-infant-loss period, and is included here as part of the ending to their pregnancy experience. The material which surfaced in this section emerged without prompting, as it was clear the women considered the aftermath of their loss valuable information to the entire pregnancy experience. Two major themes emerged: coping with grief (healing strategies), subsequent pregnancies which accompanied changes in their lives.

Coping with Grief: Healing Strategies An interesting finding in this study is the link between certain kinds of healing strategies to subsequent successful birth outcomes. For example, of the four women whom had successful subsequent births, three received counseling, or participated in some sought of ceremony, as they sought to reach a sense of closure. A number of healing strategies employed are reflected in their words and activities of the women and include: Taking Action; Ceremony as a Source of Healing; Time as a Healer; Moving On; and Delaying Action.

100 Chapter 6

Taking Action Dorothy was the only woman in this study who sought counseling sometime after the passing of her baby boy: I’m fine; you know it’s gotten better. You know in the beginning you know you don’t talk about it, I was fine, I was completely fine. And I actually did eventually get counseling but almost for like a year later, because around Mother’s Day like the next year or so, he passed away in July, so I was fine, and then I don’t know it was either before or around Mother’s Day, and I just kept thinking Mother’s Day, Mother’s Day, Mother’s Day well am I a mother, am I not a mother? I just couldn’t go to work without crying, because I couldn’t figure it out. So I did eventually get counseling, so that was very helpful. But you know I’m okay, I think I’m okay.

Ceremony as a Source of Healing Alana was the only woman who talked about the burial ceremony for her infants. It is evident that the experience of being able to share her story with others, as she assisted in the making of the documentary, also proved to be a mediating factor in helping her cope with her loss and the suffering surrounding her during her pregnancy: We had a burial for them, so I actually got closure. We had them cleaned and dressed and everything, and actually we had a casket we had made for them, and my mother has a picture of them. I mentioned the documentary before. I mean for the most part he (researcher) just kept me busy working on the documentary after the babies were born. Yeah, he was terrific. The film was important as it explores how far a person’s faith takes them when faced with serious illness, and the ending stories. My mother agreed to participate when she got sick. He’s been a lifesaver for me. He got me right when I came back from the hospital, and I think there’s some footage of me too when I was in the hospital. During this time I met a lot of people who saw the documentary and a lot of people who went through the same thing I did, and they wanted to meet me and tell me they understood and thanked me for volunteering for the documentary.

April was not only coping with the loss of her infant, but also the loss of her spouse. She had a cathartic experience after engaging in a ceremonial activity: It didn’t register, I didn’t even allow it to be a second thought, it was like you know I almost took myself back from being in recovery after having one of the children; or I sprained my ankle or something or it was just something I was just dealing with. And I didn’t. I couldn’t do it.

Reflections on Loss, Healing, and Resiliency 101 Pain, pain when the reality hit me, again we had split up already for some time now, and I was in my home. I got a call from a friend that his wife had passed. She too was a good friend. He wanted a woman to dress her, who knew her, and to prepare her for her casket. Okay great; I’d never done it before. I go to the funeral parlor and the family was already there, the husband was sitting outside with a little baby, a boy about a year old, and there she lay. She had passed giving birth to a baby. She had Sickle Cell and the report was that the doctor had advised her not to have anymore children. So, I along with another friend, we’re caring for this woman and I remember being very sensitive and nurturing, and loving and carefully caring for this body; not till I got home and I was trying to go to sleep did it hit me, that was me, that woman could have been me. I was on that edge and didn’t know it. And I spent the night just crying. I felt that I had finally mourned the death of my baby.

Time as a Healer Tina stated, “God has a way of working things out” in sharing her thoughts on what happened. This probably reflected, in part, a source of comfort during her grieving process. She stated, “It took awhile, I am fine now. Time heals; it’s been almost three years. Things are much better between us (she and her husband).” Linda’s process seemed to involve staying busy, and giving herself time to heal. She stated: I just remember going back to work soon after and got distracted. There was a period when I wondered if I needed counseling, but just umm, decided to give myself time to heal, just kept moving. I am OK, and I think my husband is OK.

Moving On Wileta’s pregnancy was unplanned with a great deal of expressed anxiety surrounding the process of birth from the time of discovery. Her short response, “When I lost the baby I was very upset about it, but I was like okay let’s move on,” is interesting, and again probably revealed a degree of relief. Freddie became pregnant only months after her loss, which may have inclined her to a more philosophical perspective, “Things happen for a reason.” She really did not reveal much in relation to her grieving process, but her decision to have a baby so soon after may suggest a conscious decision to move on: We did receive a written apology with adjustment to our bill after writing a letter and making a stink over what happened. I am still very angry. Very sad, but I guess things happen for a reason. I don’t know.

Delaying Action Yvonne expressed needing counseling but has not moved on securing it. It is interesting that she used a similar strategy in dealing with stress, “I tried not to think about it (stress) during the first trimester.” She stated:

102 Chapter 6 I know I needed to go and I think I still do (counseling). But, and you know I think I do for various reasons. My husband is not the type of person to just open up and say okay let’s talk. I think the only way I’ll get that is if I talk to another woman, who’s experienced it or I don’t know. I really don’t know what’s gonna help. But it still is a very pressing issue, emotionally, mentally and I think it is also very emotional because we’re still planning, or thinking about having another baby, and that fear of whether it’s going to happen again. Could it happen again? If we were to have a child with a disability or problem, that’s a fear. It’s so funny, because when my coworker lost her baby I pulled up all these resources, and I said you have to go talk to somebody. And here I am going through it and I haven’t. And he has (husband) told me, he says I know you need to talk about it and I need to talk about it, and I’m sorry I haven’t because that’s just the way I deal with things. But I really don’t think he is sorry about not talking. Not that he’s incapable, but I don’t think he knows how.

Subsequent Births and Changed Lives There was at least one significant change in the lives of the four of the eight women who had subsequent successful births, following their pregnancy loss. Although April was warned that it was unlikely she would have more children, she remarried and had two subsequent pregnancies: Twice! And they said I wouldn’t, shouldn’t be able to get pregnant again after that. They were both full term, both natural births. One was 8 lbs. 6 oz. and the other was 7 lbs. 2 oz. I can’t say anything changed, except for a new husband. I am still working full-time, but at a different job.

Dorothy gave birth to a baby girl almost two years after the loss of her infant. Her husband was working in the United States throughout her entire pregnancy. She stopped working after her first trimester and was placed on bed rest much earlier than in her prior pregnancy. She was diagnosed with gestational diabetes, but carried to full-term. She starts her quote sharing her thoughts about having a second baby: I’m thinking about it; in light of her being you know the only child. But I mean, the pregnancy with her, I was out for like six months, so it was like you know it wasn’t bing-bam-boom: With her well, I had the stitch a lot earlier, so I had that and I got gestational diabetes. Yeah, you know it’s like can’t you just package it up and you know put it here.

Alana ended her long-term abusive relationship, remarried and moved to another state. Her subsequent baby was born full-term without complications:

Reflections on Loss, Healing, and Resiliency 103 Well I’m with someone new and we’ve been married for two wonderful years and he’s the one you’ve been waiting for after all the hell, and he’s great and we just have the one (child). So there was three by my ex, and one with my husband. My baby was full-term without any problems, thank God.

Freddie, who was approximately 15 lbs underweight, and worked nights at the time of her prior pregnancy, gave birth this time without complications to a baby girl. She explained the changes she immediately made when she learned that she was pregnant: Yes. I did not really give myself a chance to lose the weight from the first pregnancy so I am much heavier although I don’t feel that way. I feel good. I changed my work schedule. I am working days now. I eat breakfast every morning, and have a yearning for oranges. On occasion I have back pain, but not the kind of constant sickness I experienced during the first pregnancy.

Summary of Findings There are ten findings that emerged related to the women’s reflections on infant loss in this chapter The first finding was attached to feelings of disempowerment, uncovered by such statements as, “I don’t know what went wrong,” “I’m wondering if maybe there is something we can do, maybe to prevent this from happening again,” “I really don’t understand why it happened.” Four of the women in this study shared such feelings. Another finding had to do with the quality of the doctor’s explanations on what happened. Any feelings of disempowerment experienced by the women were not remedied by the doctors who provided explanations devoid of information which could help the women understand why her infant did not survive (i.e., “It happens more than you think;” “He gave me the statistics and told me not to worry,” “Sometimes things just happen”). Five of the doctors provided explanations with little substantive information as to the reasons for infant loss. The exceptions were Dorothy’s doctor who shared specific, albeit speculative, information, and Alana’s doctor who provided a concrete answer, “Sometimes the muscles cannot support the weight of the fetus.” Linda’s doctor provided no explanation. The majority of the women (six) still made no immediate connection between the stress they experienced, and their poor birth outcome. Linda and Tina were the only women who gave value to the stress occurring in their lives as they reflected on reasons for their loss. Four of the women were alone at the time of the emergency, with family members arriving after emergency interventions. Three of the women made reference to God or their spiritual beliefs when sharing their thoughts on why they lost their infants.

104 Chapter 6

The women also shared their pregnancy story endings—post-infant loss—which included grief responses (coping and healing strategies), subsequent births, and significant life changes. Although not initially viewed by researcher as germane to this study’s purpose (a focus on events during pregnancy) it became clear that their accounts contained material important to understanding factors related to successful birth outcomes. For example, the women in the study did not conform to research findings which demonstrate that women who experienced an early preterm birth (less than thirty two completed weeks) have the highest rate of recurrent preterm birth in subsequent pregnancies.2,3 Four of he women in this study who had subsequent pregnancies had full-term births without complications; although in Dorothy’s case, much earlier medical interventions were applied successfully in conjunction with noted changes in her life. Another interesting finding is that of the four women who expressed feelings of disempowerment, none of them were part of the group of four women who had subsequent successful pregnancies. Additionally, four of the women who had subsequent pregnancies also reported significant life changes, compared to the other four women who reported no changes. In this study, of the four women who had successful subsequent pregnancies, all had engaged in some sought of counseling, or ceremony to help them go through their grieving process. It is important to remind the reader that there were no pre-existing or medical issues reported by the majority of the women (seven), except for Linda who was followed by a hematologist throughout most of her pregnancy. Two of the women, Dorothy and Alana, were hospitalized for two to three weeks prior to the loss, as medical interventions were tried to stop preterm births. In this study, of course all of the medical interventions tried, regardless of the level of expertise, timing, and intensity failed at stopping the premature births for all of the women. This concludes the chapters on findings.

The Convergence of Complicated Factors As the pregnancy stories unfolded in every case the weight of each negative factor continued stacking up one by one leading me to question at what point does it all become too much to bear?4 The discussions in the preceding chapters reveal the preponderance of negative factors experienced by all of the women in varying degrees linked to stress responses, which offered an understanding of the cumulative stressors present in each pregnancy. A medical diagnosis assigned in one case, albeit late, caused suspicion about undiagnosed medical factors implicated in other cases. However, even without known medical variables, as the pregnancy stories progressed with

Reflections on Loss, Healing, and Resiliency 105

the combination of negative factors, each pregnancy took on an almost predictive nature. Although there were mediating variables (i.e., emotional support from family, a positive connection to work, trust in doctor, educated, married and employed, etc.) the strength of the negative variables, which were cumulative proved difficult to overcome. Initially there was little sense that the pregnancies of the women studied within the context of their lives were unusual. That sense was soon replaced with an impression of imbalance in the lives of the women. Things were outof-kilter during early pregnancy stages and opened a pathway for other negative contributors to enter. The simultaneous presence of factors (i.e., familial history, key events, warning signs, lack of spousal support, precipitating causes weight issues, possible medical issues, and depression), including exposure to daily stressors presented cumulative risks from various sources and are suspected to be implicated in the pregnancy outcomes for the women in this study. The concern expressed by the National Academy of Sciences, 2007 that the basis for diagnosis and treatment of preterm labor relies on inadequate information on how to prevent preterm birth, is probably evidenced in the medical treatment received by the women in this study. Such care relied on “routine” tests and communication consisting of little useful information. The issue of race and factors associated with race was the most important single variable as it was embedded in the interactions with larger systems (i.e., doctors, hospitals, and work), and influenced women’s concept of self and self-expectation in ways that served to add additional significant burdens. Each woman shared a racial history and although, as mentioned, the women were generations away from the horrific events surrounding the enslavement of blacks in America the coping styles attached to that period to service racism were evident in their pregnancy stories. The reflections on events surrounding the loss, again highlights the need for the doctor to be a medical technician and informed expert, able to provide effective care especially around risk identification and reduction, and to help the women better understand the possible reasons for their loss. The healing strategies discussed corroborates other research studies, but also reveals a possible connection between active involvement in healing activities (i.e., bereavement ceremonies and professional counseling) to subsequent successful pregnancies; an area worthy of further research. The findings in this study relate to its sample, but are probably applicable to wider similar groups; the findings provide new insights illuminated by the women’s lived experiences. The next chapter, Making Sense of it All, will synthesize major findings with additional observations, insights, and thoughts on the material.

106 Chapter 6

Notes 1. Diane L. Rowley, “Research Issues in the Study of Very Low Birth Weight and Preterm Delivery among African-American Women,” Journal of the National Medical Association 86, no. 10 (October 1994): 761-764. 2. Richard E. Behrman, and Adrienne S. Butler, eds., “Preterm Birth: Causes, Consequences and Prevention,” Board on Health Sciences Policy Report 2007, http://books.nap.edu/catalog.php?record_id=11622 (accessed February 2009). 3. Sean M. Esplin, et al., “Paternal and Maternal Components of the Predisposition to Preeclampsia,” The New England Journal 34, no. 2 (March 2001): 867-872. 4. Bruce S. McEwen, “Allostasis and Allostatic Load: Implications for Neuropsychopharmacology,” Neuropsychopharmacology 22, no. 2 (2000): 108124.

CHAPTER 7

Making Sense of it All: Expanded Observations Women’s Lived Experiences with Infant Mortality This research focused on a specific sub-group of black women, middle-class, married, and educated in an attempt to understand why such a phenomena (BIM) would occur in this group. It became clear that regardless of facts uncovered, factors involving living circumstances, family support, accessibility to medical care, problematic relationships with spouse, family support, individual behaviors and choices, medical interventions, key events, etc., there was a familiar backdrop, a consistent starting point. The residual effects of a horrific racial history was so embedded in the psyche of the women, with corresponding coping styles not always easy to understand but in many ways at the crux of the matter. This backdrop shaped by history, was worn like a layer of clothing by all of the women in this study, whether they realized it or not revealed over and over again in the accounts cited and discussed, and is viewed as a powerful but burdensome part of their pregnancy stories, the framework of their lives in which pregnancy occurred. What are described in the preceding chapters are the complex connections and interactions between various factors such as: history, culture, gender, psycho-biology, family, personality, etc with race playing a pivotal role. The book opened with a metaphor, the story of adaptation and survival of displaced Queen Palms to help make the entry into the complicated topic of BIM a little less daunting. The metaphor is fitting especially when examining BIM through the lens of a systems perspective which makes clear the need to view people and environments as a unitary system within a particular cultural and historical context; the perspective used in this study.

108 Chapter 7

The intersection of person with environment and the consequences therein are at the center of this multi-case study, with the overarching research question is, given the disparity in the infant mortality rates among middleclass black and white women, are there factors attached to the pregnancy experience of middle class black women, which could help in understanding the adverse birth outcomes for this target group? The answer to this question is a resounding “yes” corroborated by a significant amount of cited research, validated by a pilot study, a focus group and anecdotal material provided by hundreds of black women since the completion of this study, and supported by the findings herein. It is important to note, that although the recollections of each woman were concentrated on the time frame involving her pregnancy, the study captures important events which occurred prior to and after her pregnancy. This broader view of each woman outside the snapshot of her pregnancy adds context to each pregnancy story. The discussion below synthesizes the major findings.

Early Findings Attached to Stress The beginning inquiries explored the meaning of pregnancy for each woman and her interactions with the personal and broader systems surrounding her pregnancy. The major findings discussed below uncovered early sources of stress, which probably affected the physiological and emotional adaptation to pregnancy.

Personal Decision One source of stress to emerge early was the woman’s personal decision to have a baby prior to planning jointly with her husband. This is important as it could represent an early source of tension between the woman and her spouse in relation to the pregnancy with negative consequences throughout the entire pregnancy, if the decision did not fit into the practical realities of her family’s circumstances. The majority of the women seemed driven by powerful external and internal factors, which served to influence their decisions regardless of the presence and weight of contradictory facts. Several women spoke of a range of influencing factors on their personal decision to have a baby, or not have a baby, which helped to draw attention to the meaning of pregnancy for each woman and the positioning of her spouse in relation to the pregnancy. In many ways there seemed to be a distinction between expectations of the paternal role during pregnancy, which might be different after the birth of the baby. The pregnancy was the woman’s domain, her personal prelude to motherhood.

Making Sense of it All 109

Key Events As focus turned to what was happening in the woman’s life during this early stage of pregnancy, another source of stress to emerge was attached to key events. The women recalled events that were of particular importance to them during this period. Although, not all events were negative, most were, and the strength of this finding was unexpected. A seriously ill mother, the death of a significant family figure were the kind of events that loomed large in the background for the majority of women, at this early stage and for some throughout their pregnancy. Although the research is consistent about stress causing physiological changes in the body which contribute to poor birth outcomes, there is much discussion on the kinds of stress that are harmful. However, there is little disagreement that the strength of combined stress can overload the body’s capacity to handle, and is linked to diseases across the medical spectrum.1

Emotional Support Family support was evident for the majority of women, although many close family members were separated by distance. The most important family tie while pregnant was the one sought with the woman’s spouse. Although, the role of the spouse was unclear at times or problematic, it was the most consequential role during pregnancy. Most of the women wanted a clear demonstration of support from their spouse, which in several instances was not forthcoming. The majority of the women revealed “issues” with their spouse but such issues usually did not rise to the level of not feeling emotionally supported during pregnancy, but did pose problems in the marriage. Three of the women in this study did not feel supported by their spouse during the discovery stage of their pregnancy. How this impinged on their pregnancy is unclear, but surely it was not without consequence. The women shared various reasons for not feeling supported by their spouse, which reflected problems in the marriage, probably exasperated by the pregnancy. 2

The Complicated Factors Associated with Medical Care Race and Gender/Doctor Selection In this study race did not initially appear to play a role in the delivery of care, but was implicated in the quality of the communication between patient and doctor. However, as the researcher analyzed the findings the role of race became increasingly suspicious in the overall quality of medical care. Race and gender preference was given high priority by the women when it came to selecting their doctors. The majority of women apparently made a connection between concordant race and gender and the quality of medical care, and took actions to ensure that their primary medical care provider was

110 Chapter 7

black and female.3 The women seemed to be looking for an emotional connection with their doctors, starting from a race and gender commonality, anticipating comfort in communication, respect and sensitivity. Ironically, as mentioned, only two of the women ended up being followed by doctors of concordant race, but the others described a comfortable and positive relationship with their doctors. However, it is suspected that the level of comfort may have skewed their perceptions of the actual quality of services they were receiving, and allowed them to accept doctor’s responses to medical complaints, which were in contradiction to how they were feeling and what they were sensing.4 Another factor was possibly not waning to believe that there was indeed a problem with their pregnancy, and not being adequately assessed for the existence of possible problems was a better choice. Additionally, the current patient/physician relationship model encourages patient passivity and complete acceptance of physician’s assessment. Regardless of the reasons, the women stated their relationship with their primary physicians was positive.

Familial History The majority of the women shared a familial history of infant loss, which is consistent with much of the research.5 In addition; the majority of biological fathers in this study also had a familial history tied to poor pregnancy outcomes or infant loss. This finding was a surprise, as much of the research demonstrates a link between maternal family history and infant loss with little research on paternal family history. One research study which supports the finding in this study, was conducted by Sean Esplin and a team of researchers (2001) who sought to understand if there was an inherited paternal component to preeclampsia (sudden sharp rise in blood pressure during pregnancy) by identifying men whose mothers had had preeclampsia during their pregnancy. In the group of men whose mothers had preeclampsia 2.7 percent of the offspring (26 of 947) were born of pregnancies complicated by preeclampsia, as compared with 1.3 percent of the offspring (26 of 1973) in the control group. The study demonstrated that men who were the product of a pregnancy complicated by preeclampsia were significantly more likely than control men to have a child who was the product of a pregnancy complicated by preeclampsia. Such studies validate what feels intuitively natural in relation to the paternal inheritable attributes affecting their offspring. Nonetheless, the important take away from this area of exploration was the high rate of maternal and paternal familial history linked with poor birth outcomes for the women in this study, and the missed opportunity of the doctors to use such information is assessing risks, especially in light of women’s complaints. This area of exploration also highlighted the value of the fathers’ input, which is missing in the conversations and research in relation to BIM.

Making Sense of it All 111

Warning Signs This was one of the strongest and most perplexing finding. The majority of the women in this study had medical complaints lasting throughout their pregnancies. It is interesting that, for the most part, the women maintained a trust in their doctor’s judgment, even leading to temporary periods of reduced anxiety in relation to the medical symptoms they were experiencing, because the doctor assured them that, “everything is fine,” “all is OK.” What is evident in this study is a tacit agreement between patient and doctor around the traditional role, which frames this professional relationship; I talk, you listen. The doctors may possess an attitude of authority, part of their professional culture, making it difficult to question the information provided.6 Culture is a concept not limited to patients, but also applies to the professionals who treat them. Every medical specialty field embodies a culture in the sense that they too have a shared set of beliefs, norms, and values, reflected in the patient/physician roles and the communication. There are still additional issues attached to the quality of doctors’ information on the effective medical interventions to take in response to the common complaints presented by the women in this study. There is concern that the basis for diagnosis and treatment of preterm labor relies on inadequate information on how to prevent preterm births. The most common treatments, as used on Dorothy and Alana, are usually applied during the final weeks of pregnancy, and are concentrated on slowing down contractions. This approach, according to research, has not reduced the incidence of preterm births but is reported to be effective in selective cases; but not for any of the women in this study.7 Two of the women, Dorothy and Alana, received progressively aggressive medical interventions starting from around 23-24 weeks of pregnancy, aimed at stopping pre-term births. Dorothy was the only woman given a diagnosis, related to a short-cervix near the end of her pregnancy which, she explained was by then was too late to reverse her premature birth.8 Her subsequent successful pregnancy included knowledge of a short-cervix with interventions applied to reduce her risks which included a leave from work after during her first trimester. Ross (2009) posits that a short cervix is an optimal predictor of preterm delivery in low-risk women. Some researchers have recommended that doctors consider performing baseline ultrasonography to assess cervical length, especially at 13-17 weeks of gestation. Since Dorothy had no prior births, there was no history regarding the evidence of this problem, but there was familial history of poor birth outcomes on both maternal and paternal sides, and she was overweight, indicating increased risks for poor pregnancy outcomes. To assess for cervical lengths of those women identified at-risk for poor pregnancy outcomes, and who present medical complaints could help to extend the period of gestation thereby decreasing the rate of pre-term births. There is a new development yielding promising results in addressing premature births. In 2011 the FDA approved Makena, a synthetic (manufac-

112 Chapter 7

tured) long-acting version of progesterone, a hormone that is effective in maintaining a pregnancy for a sub-group of women with prior LBW single pregnancies. The introduction of Makena is exciting for many in the field of Obstetrics who now have an option to present to patients at risk for premature births. However, there are concerns about the compounding of active ingredients by pharmacists, and since there is little knowledge on exactly how the drug works in maintaining a pregnancy, women should proceed cautiously and stay informed on research regarding the effectiveness and side effects. The March of Dimes is a reputable source for up-to-dateinformation on the issues associated with this new drug, including availability and cost.9 History offers an important lesson here. In the past, advances in neonatal technology medicine and treatment of premature births and LBW babies successfully contributed to a lower IM rates for certain groups. The racial disparity in IM rates between whites and blacks persisted, suggesting that black infants benefitted far less than did white infants. It is important that that the advancement of new drugs to reduce the incidence of pre-term births is provided across socio-economic racial groups. Anything less will fail to bring about a reduction in the IM disparity.

A Broader View It is important to place this part of the discussion in a broader context, understanding that even the advances of a new drug to reduce the risk of preterm deliveries (Makena) is not addressing the cause of the problem. The National Academy of Sciences (2006) called for more targeted research and treatment alternatives in the field of Obstetrics, while also pointing out major obstacles to conducting clinical research. The declining number of residents interested in entering the fields of Obstetrics and Gynecology affects the pipeline of clinical researchers. The rising medical malpractice premiums and the ability of academic programs to provide protected time for physicians to pursue research have consequences on quality of care issues. Such facts expose a medical specialty facing unique challenges. There are other issues. Studies demonstrate that doctors’ lack of effective interventions may reflect the lack of preparedness to hold substantive conversations with women around behavior or other health-related changes to ensure a positive birth outcome.10 For example, both Dorothy and Freddie had weight problems, which were not addressed. Perhaps a more in-depth conversation would have yielded information about Alana’s abuse. Throughout this project I took note of the simplistic quality of doctors’ responses and explanations, which did not seem to appreciate their patient’s education level. This may reflect an effort to keep it simple to avoid causing concern. On the other hand, here again may be further evidence of a culture entrenched in attitudes attached to authority and superiority and personal biases.11 There are efforts in the field of medicine to close the gap between

Making Sense of it All 113

actions linked to “professional culture” which often do not match the needs of the patients; the consequences are just too high.12 Additionally, black women have so many pregnancies resulting in infant loss; it is likely that this fact played a role in shaping physicians’ attitude in relation to BIM, which in turn affected the manner in which the doctor responded to medical complaints presented by the women.13 According to the women’s accounts there were no in-depth conversations about their medical complaints and only one specialized test was ordered by Wileta’s doctor. Although she did not follow through, he was the only doctor to order a specialized test early, and was also the only doctor with whom an extended patient/physician relationship existed prior to pregnancy.

Body’s Alarm System Warning signs served to alert the women that something was not right; the women believed that their body’s alarm system was operational. This means that the women had to attempt to turn off their body’s warning system to accept the medical feedback. It is difficult to measure the consequences related to not trusting one’s internal alarm and relinquishing such trust to one’s physician. April’s words, “So I don’t really understand my body anymore after that experience,” reveals distrust of her body’s internal warning mechanism which could result in significant health consequences.

The Experience of Stress as Pregnancy Progresses Race and Culture Much of the research and literature on the experience of stress for black women demonstrate chronic exposure to life stressors just by virtue of being black regardless of socioeconomic status as depicted in the below account shared by Dorothy.14 You haven’t gotten here by not thinking that people are racist, or not thinking that people are prejudiced against you, not knowing that people have prejudged you. That’s what you deal with, that’s what you have to deal with every day of your life.

Dorothy’s description aligns with the “weathering” construct, which provides a feasible explanation for disease and adverse birth outcomes due to internalization and chronic exposure to stress. In dealing with racism “everyday of your life” a chronic stressor, the body prematurely ages making women susceptible to poor birth outcomes and other diseases.15 Studies suggest that women with very low birth weight babies were three times more likely to have experienced interpersonal racism than women with children of normal birth rates. As previously noted, foreign-born black women see their

114 Chapter 7

rates of infant mortality rise to the same level as U.S.-born black women within a generation. This could suggest the same internalized consequences as the result of social conditions endured by black women born in America. The unique experiences with stress surfaced during a focus group meeting for an unpublished pilot study by this researcher (same topic and target sample) conducted in 2001 (cited in chapter 3) where the business as usual theme surfaced in Carla’s account. Threads of Carla’s story were repeated in the pregnancy stories of the women in this study, with the most compelling theme related to self-expectation infused with a racial history. Although we are hearing from women several generations away from “the scene of the crime” (Generation X members) they are still influenced by, and using coping styles passed down through generations designed to counteract racial stereotypes, especially related to pregnant black women.16 The words of the women provided the context and the connections to history, and a unique perspective on their coping behaviors and experience with stress. The question here is, how does one give value to and/or fully recognize the stress in one’s life while needing to perform in a business as usual manner, reflecting an expectation of self? Much of the answer was observed in the employment of ineffective coping styles in relation to stress, which did nothing to reduce stress, in fact probably, increased the level of stress, but made the women feel more in control of the stressful events in their lives. For example, Linda who talked about “only letting in a little (stress) at a time,” was involved in trying to suppress unwanted thoughts she felt would be stressful, but instead was involved in a thought cycle where efforts to suppress thoughts actually increased the frequency of the thoughts attached to stress and stress responses.17 Stress related to race emerged in interesting ways. The women tended to allude to its presence rather than refer to specific encounters with racism, or their specific feelings about racism. The “If I were white” statement made by Carla is loaded with meaning and encompasses layers of thoughts connected to a racial history. I am an African-American, and perhaps the women felt the issue could stand with limited explanations, as a shared experience.

Warning Signs: Source of Stress Warning signs are discussed here as significant sources of stress and in the preceding section on medical issues were precursors to pregnancy problems probably as the result of stress. This speaks to the insidious nature of stress. There are the medical outcomes caused by ongoing elevated levels of stress hormones, and there are responses to the medical outcomes (i.e., anxieties, fears) which also causes more stress and stress hormones. Warning signs were particularly troubling issues for the majority of women who suffered medical symptoms throughout their pregnancies, and was at the center of much of the communication with their doctors. For the majority of the women warning signs were severe and persistent; several women experienced and shared feelings “that something was wrong” and

Making Sense of it All 115

others shared feelings of anxiety, worry, and fear, all triggers of measurable stress responses causing negative physiological changes, usually unbeknownst to the women.18

Secrets Secrets surfaced as a theme at different times during this research project, and were clearly evident in the lives of the women. For example, Tina was harboring thoughts of having an abortion, and both she and Linda did not share suspicions of their husband’s infidelity. Freddie did not share with anyone her fear about a past pregnancy termination interfering with her attempts to become pregnant. Most of the women stopped sharing their worry about their warning signs, and Alana went to great efforts to hide her abusive relationship. The feelings attached to secrets produce similar stress responses as those attached to chronic worry or anxiety. It is suspected that what surfaced in relation to the presence of secrets in the lives of the women in this study only skimmed the surface. As I discussed aspects of this study with other women of all races the responses in relation to secrets clearly indicated that it is as an area which resonates with women and is worthy of much more investigation, especially in relation to its deleterious affects on health in general and maternal health specifically. An important observation was the willingness of the women, once engaged in this project, to share the most intimate details of their pregnancy story with researcher. Some secrets were shared in the context of the pregnancy story and seemed cathartic for all of the women who appreciated the fact that someone valued their experience enough to listen from the very beginning of their pregnancy story the end. This approach would seem to have value in the bereavement process for women who have experienced a pregnancy loss.

Lack of Financial Options As mentioned, there was disappointment about the lack of financial options available for extended time off, especially after the anticipated birth of the baby. Although the overwhelming majority of the women held fulltime positions, these families were without disposable income at this juncture in their lives, a reality corroborated by PEW Research Center which found that in 2011, the wealth of white households are now worth twenty times that of blacks. The evidence of attachment to traditional ideals of family makes it likely that expressed feelings of disappointment by their wives about the lack of financial options weighed heavily on the men, but for the most part this was not a subject discussed. So although there was a lack of paternal involvement around the early pregnancy planning there was an expectation for men to “step up” to their new financial obligations, an issue of probable sensitivity for the men, and a possible source of tension.

116 Chapter 7

Relationship with Spouse It is interesting to note that the women in this study are part of a generation to experience a consistent and dramatic rise in women joining the workforce, along with an increase in the number of African-Americans entering the ranks of the middle class (although such past gains are now on the downturn). Additionally, there is an increase in the diversity of family structures, a reflection of America’s transition largely a result of economics, but not evidenced in the families in this study. Even in light of a pregnancy, the traditional roles largely determined by gender were in place. There were no modifications in “women’s” domestic responsibilities, or changes in the other responsibilities traditionally assigned to women during her pregnancy. This seemed to reflect traditional expectations and what the women were willing to accept as their roles. However, there was tension noted in relation to the uneven responsibilities during pregnancy, an added source of discontent in the relationship, but not enough to bring about a change. There were clearly opportunities for the fathers in this study to take on a more active role in relation to the pregnancy. For some of the couples, the preoccupation on martial problems interfered with a healthy and appropriate focus on issues related to the mother’s health and the unborn infant. For the other couples, what was observed was the impetus for father’s involvement lacking. Perhaps this was a function of culture, or not understanding or giving credence to the importance of the paternal role during the pregnancy stage of a child’s life. There was also a sense of exclusion of the spouse’s role from the woman’s early decision to have a baby; and a continued subtle peripheral positioning of spouse in relation to the pregnancy Is it possible that the stereotypes attached to black fathers have found its way into these relationships, causing presuppositions on how men will behave, and the women have adjusted their expectations to fit? Regardless of the reasons attached to missed opportunities, the fact remains that this is an area requiring remediation in light of the very real BIM phenomena and given the fact that this is a modifiable piece of the problem, especially in the families where the fathers are “present.” It is important to add that little is discussed about the psychosocial needs of spouses during the preconception phase and later. Spouses are often left to figure things out on their own. Addressing a host of male issues around paternal preconception care and areas for paternal involvement during pregnancy would reduce adverse birth outcomes. Such services are needed but are not yet provided, and not yet embraced as important in addressing BIM.19

Precipitating Causes The degree to which the women in this study experienced precipitating causes was an unexpected finding. There is no etiology attached to these

Making Sense of it All 117

causes, they are simply participatory occurrences resulting in unforeseen consequences which appear to tax the pregnancy sufficiently to trigger a breaking point, resulting in premature delivery. This is one area associated with poor-birth outcomes clearly in the women’s realm of control; she can simply avoid them. This is especially true if the women are aware of existing risks, which then enables them to assess the kinds of precipitating events that could be deleterious to their pregnancies. For example, with knowledge of a short cervix and the presence of other risk factors, the probable contraindicated trip and the excessive physical activity Dorothy and Freddie engaged in was avoidable. Possessing clear information, as the result of more in-depth inquiries and tests, probably resulting in a diagnosis, could avoid or reduce involvement in precipitating events.

Ending Pregnancy Stories The women offered much of the information in this section with little prompting but as natural endings to their pregnancy stories which started with events immediately prior to infant loss. It was interesting that the time between the interview and event did not seem to matter as the emotions attached, although monitored, were evident and the details recalled were full. There may have been areas where the time sequence was off, but the information seemed accurate, and was consistent with other descriptions with overlapping information.

Disempowerment The first theme to emerge was a feeling I have labeled disempowerment. In other words, the experience of having power taken away which was revealed in the words of the women following their recollection of the loss of their infant (i.e., “Why did this happen to me?”). Such feelings of disempowerment may have lasting consequences much like the feeling of not being able to trust, one’s internal warning system. Therefore, the next theme to surface, in relation to doctors’ poor explanations to the women on why they lost their babies, was especially disconcerting. There seemed to be a missed opportunity to reduce feelings of disempowerment that upon further review seemed directly tied to the woman’s ability to move on in certain areas of her life (none of the women who expressed feelings of disempowerment had subsequent pregnancies).

Healing Strategies Some of the women in this study referred to God and spirituality in reflecting on the reasons for their loss. Although, other women did not openly express such feelings, there were indications of their faith (framed Bible verse on the wall, a cross-worn, etc.). Therefore, the women in this study

118 Chapter 7

support other research findings, which call for professionals to be cognizant of the important role of spiritual and religious beliefs in providing services to women following infant loss.20 The findings in the section, on post-healing, revealed interesting links between subsequent births with active involvement in healing strategies, and the ability to make significant changes. All of the women who were actively involved in healing strategies (professional counseling, burial ceremonies) were part of the four women who had subsequent successful pregnancies. All of the women could have certainly benefited from professional/spiritual counseling either during pregnancy (Wileta, Alan, and Tina) or subsequent to pregnancy loss (i.e., Yvonne).

Role of Stress Devalued For the most part, the endings to the pregnancy stories did not include recognition that stress could have played a role in the poor-birth outcomes. This underscores the fact that although the evidence of stress was prevalent throughout the pregnancies, and the women recognized the existence of stress in their lives, the value placed on stress and its consequences was minimal. This has important implications for prevention interventions for expectant mothers and for a life course perspective on maternal health. An important aspect for both is the recognizing and understanding of the consequences of stress in one’s life.

Another Paradigm Shift in the Making At the beginning of this book the new paradigm used to examine the BIM disparity was presented. The new paradigm emerged as a result of extensive research demonstrating that the poverty paradigm failed to explain why other black women across the socioeconomic spectrum suffered similar rates of BIM. The viewing lens used in the past only focused on issues related to poor socioeconomic conditions. The new paradigm considers the role of racism and it’s far reaching consequences on one’s health. One might observe a move from blaming the victim (poor utilization of prenatal care, poor eating habits, high involvement in risk behaviors, being poor, etc.) to a structural understanding of the problem. The new paradigm has brought about a different level of discussion on the IM disparity, and arguably some movement in increasing awareness about the BIM phenomena, and viable explanations on the persistent disparity between black and white IM rates. What is now emerging is a science which once again is pushing us to rethink how we view disease and offers an explanation for the cause of disease through an understanding of the origin of disease.21

Making Sense of it All 119

Viewing BIM through the Lens Epigenetics The idea that early life interaction with environment has widespread consequences for later health is attached to the Developmental Origins of Health and Disease theory (DOHaD) studied extensively by Barker (2007) in the UK. The principles and concepts of epigenetics have been applied to the DOHaD approach, which considers evolution as a complex process of development brought about by external factors affecting the physical trait or feature of an organism. The development in the science of Epidemics is exciting and since the completion of this study, there has been increasing attention by experts on the immune system and gene expression, which can be adversely affected and altered by certain experiences and exposures such as repeated infections or undue stress. For example, the stress level in a pregnant women acts as a switch that affects whether or not certain genes are turned on or off in the developing fetus, possibly “programming” the baby for lifelong medical and/or psychiatric problems such as hypertension and cardiovascular disease, glucose intolerance and insulin resistance, infection and inflammation, and even changes in mental abilities, for generations.22 Additional findings concluded that genomic imprinting appears to be an ever-changing process in the placenta, meaning that pregnancy risks can change throughout the course of gestation. This represents a change in the thinking of the medical community which believed gene imprints remained static after twelve weeks. This could mean that there are several windows of opportunity during pregnancy to detect risks and to also change pregnancy outcomes that may arise later, especially pregnancies complicated by fetal growth restriction and preeclampsia.23 The epigenetics theory adds more complexity to the already elaborate evolution and development theories. However, it may also shine light on some unexplained phenomena and various underlying diseases including BIM. Additionally, such findings have implications for the approaches used to redress BIM, as “deprogramming” could be a formidable challenge, but for the purpose of this discussion, epigenetic theory could explain the stubbornness of the BIM phenomena and its disregard for psychosocial and socioeconomic mediators. Although the persistent and consistent experiences of racism, along with other contributing factors are clearly implicated in BIM, what began the trajectory of generations of infant loss may have its origin in the events of captivity and enslavement; resulting in stable alteration in gene expression. Nevertheless, the overarching role of history (which could take on new meaning in light of Epigenetics) and a persistent hostile social environment (racism) are the major differentiating factors implicated in the pregnancy losses for black American women, regardless of socio-economic status,

120 Chapter 7

which should not be ignored in understanding the disparity in IM rates between black and white babies.

The Study Shapes an Explanation for BIM in Black-Middle Class Women Stated simply, race and stress are linked. Stress is implicated in the causation of disease across the medical spectrum. For American born blacks, the relationship between race, stress and disease is significant with origins linked to a horrific racial history and persistent social conditions incongruent with all aspects of health. For black women, these combined and cumulative factors increases susceptibility to health risks, including risks related to maternal health. The added stress related to the often complicated interactions with one’s personal and broader systems (as revealed through women’s accounts in this book) can over-burden the body’s ability to maintain a state of equilibrium. When the body’s capacity to maintain its equilibrium is compromised for pregnant women the fetus is the causality as the body struggles to regain homeostasis. But what about the majorities of black women who share a similar past and who are subjected to the same social conditions but have successful birth outcomes? The answer is related to the degree of the stress load and the individual’s natural physiological ability to handle, and/or the presence of other bio-physiological and psychosocial conditions which, in many instances go undetected and significantly increase risks when combined with embedded stress and those stressors in daily living as detailed in the pregnancy stories of the women in this book. Michael G Ross (2009) asserts that there are mechanisms which if present during pregnancy are presumed to increase the risks in pregnant women. These mechanisms provide a pathway for increased susceptibility to adverse birth outcomes. The major mechanisms include: decidual bleeding (may occur around the time that a pregnant woman would otherwise expect her menstrual period), cervical incompetence (speculated in Dorothy’s case), uterine distortion, (caused by abnormalities in the Mullerian duct and in most cases are treatable), cervical inflammation (resulting from bacterial Vaginosis [BV], trichomonas ), maternal inflammation/fever (often caused by a urinary tract infection), hormonal changes, and insufficient amounts of blood flowing to the placenta during pregnancy, which can lead to fetal distress (caused by hypertension, insulin-dependent diabetes), and obesity all of which are detectable and treatable. The role of race unfortunately remains central in understanding BIM, even in considering the major mechanisms stated above, which adds significant risks to pregnancy outcomes. As discussed in proceeding chapters, the disparate level of medical interventions are largely based on race, and from what was learned can go unnoticed even by the women.

Making Sense of it All 121

Nevertheless, what remains true is the fact that the majority of black American women have positive pregnancy outcomes, which should inform us of the possibility of eliminating the IM disparity. Black women did not cause the problem of BIM, but in addition to policy initiatives designed to support all pregnant women, and advances in Obstetric medicine and maternal health, black women and men, along with professionals in fields associated with Obstetrics have an important role to play in the reduction of BIM. Such efforts must also focus on helping physicians and other professionals work in partnership with patients to detect bio-physical and psychosocial contributors to reduce risks. More importantly, a shift in the way both physicians and patients view maternal health is necessary. Maternal health requires a view over the course of a woman’s life, not only during the narrow span of a pregnancy.

Notes 1. Marci Lobel and Jennifer Graham, “Translating Psychosocial Research into Culturally Competent Health Care” (presentation delivered at the Women’s Health Interdisciplinary Conference sponsored by the American Psychological Association, Washington, DC, April 2002). 2. Vijaya Hogan and Cynthia Ferre, “The Social Context of Pregnancy for African- American Women: Implications for the Study and Prevention of Adverse Perinatal Outcomes,” Maternal and Child Health Journal 5, no. 2 (2001): 67-69. 3. Lisa P. Cooper and Debra Roter, “Patient-Provider Communication: The Effects of Ethnicity on Process and Outcomes of Health Care,” Institute of Medicine Report 2003, http://www.nap.edu/openbook.php?record_id=10260&page=552 (accessed March 2009). 4. Rachel L. Johnson, et al., “Patient Race/Ethnicity and Quality of Patient– Physician Communication during Medical Visits,” American Journal of Public Health 94, no. 12 (December 2004): 2084-2090. 5. Michael W. Varner and Sean M. Esplin, “Current Understanding of Genetic Factors in Preterm Birth,” International Journal of Obstetrics and Gynecology 112, Supplement no. 1 (February 2005): 28-31. 6. John Robbins, Reclaiming Our Health (Tiburon, CA: HJ Kramer 1998), 35-57. 7. Richard E. Behrman and Adrienne S. Butler, “Preterm Birth: Causes, Consequences and Prevention,” Board on Health Science Policy Report 2007, http://books.nap.edu/catalog.php?record_id=11622 (accessed February 2009). 8. Jay D. Iams, Robert L. Goldenberg, Paul J. Meis, and Brian Mercer, “The Length of the Cervix and the Risk of Spontaneous Premature Delivery,” New England Journal of Medicine 334, no. 9 (February 1996): 567-572. 10. Makena: Most reputable source of information on access, cost and other issues in relation to the use of this drug to reduce preterm births is March of Dimes: http://www.marchofdimes.com. 11. Becker H. Marshall and Nancy K. Janz, “Practicing Health Promotion: The Doctor’s Dilemma,” The University of Michigan, School of Public Health. Annals of Internal Medicine 113, no. 6 (September 1990): 419-422.

122 Chapter 7 12. Michelle Van Ryn and Jane Burke, “The Effect of Patient Race and SocioEconomic Status on Physician’s Perception of Patient” Social Science and Medicine 50, no.6 (March 2000): 813-828. 13. Rachel L. Johnson, Debra Roter, et al., “Patient Race/Ethnicity and Quality of Patient-Physician Communication during Medical Visits,” American Journal of Public Health 94, no. 12 (December 2004): 2084-290. 14. Wendy M. Troxel and Karen A. Matthews, “Chronic Stress Burden, Discrimination, and Sub-Clinical Carotid Artery Disease in African- American and Caucasian Women,” Health Psychology 22, no. 3 (May 2003): 300-309. 15. Arline T. Geronimus, “The Weathering Hypothesis and the Health of African-American Women and Infants: Evidence and Speculation,” Ethnicity and Disease, 2 no. 3 (February 1992): 207-221. 16. Shelly P. Harrell, “A Multidimensional Conceptualization of Racism-related Stress: Implications for the Well Being of People of Color,” American Journal of Orthopsychiatry 70, no. 1 (January 2000): 42-54. 17. Daniel M. Wegner, White Bears and Other Unwanted Thoughts: Suppression, Obsession, and the Psychology of Mental Control (New York, Guilford Press, 1994 Edition). 18. Patrick D. Wadhwa, Christine Dunkel-Scheitter, et al., “Prenatal Psychosocial Factors and Neuroendocrine Axis in Human Pregnancy,” Psychosomatic Medicine 58, no. 5 (1996): 432-446. 19. Keith A. Frey, Shannon M. Navarro, Milton Kotelchuck, Michael C. Lu, “The Clinical Content of Preconception Care: Preconception of Men,” American Journal of Obstetrics and Genecology: Supplement B, no. 6 (December 2008): 389395. 20. Paulina Van, “Breaking the Silence of African American Women: Healing after Pregnancy Loss,” Health Care for Women International 22 (2001): 229-243. 21. Patrick D. Wadhwa et al., “Developmental Origins of Health and Disease: Brief History of the Approach and Current Focus on Epigenetic Mechanisms,” Semen Reproductive Medicine 27, no. 5 (September 2009): 358-368. 22. Dawn Malaspina, C.Corcoran, et al., Acute maternal Stress and Schizophrenia in Offspring,” BMC Psychiatry 8, no. 71 (August 2008): 71. 23. Yevqeniya Pozharny, et al., “Genomic Loss of Imprinting in First-Trimester Human Placenta,” American Journal of Obstetrics and Gynecology 202, no. 4 (April 2010): 391.

Chapter 8

Lessons Learned What We Know Infant mortality rates (IMR) refer to the number of infant deaths per 1,000 live births. Black Infant Mortality (BIM) refers to the number of black babies who die before their first birthday. The BIM rate is more than twice the white IM rate in the United States for 2009 (12.40 and 5.35, respectively), and in some states the BIM rates are close to three times more compared to white IM rates. For example, the IM rates for blacks and whites respectively in D.C. is 16.53 compared to 4.36, and in Wisconsin 14.7 compared to 5.36.1 Although a decrease in the overall IM rate is observed for most groups between 2007-2009, the significant disparity between white and black IM rates remain. The change is part of an overall slight, but noteworthy decline in IM rates over the course of four years. However, according to the most recent data on worldwide standing, the United States is ranked 34th in overall IM rates (2011).2 We now understand that even when variables such as access to health care, income, education, maternal age, and marital status are held constant, black women still deliver babies who die before age one twice as frequently as white women.3 This paradigm change required significant adjustment in thinking in relation to BIM and helped to shape the purpose of this qualitative study. This qualitative study deliberately targeted a sub-group of black women that should not experience mortality rates at more than twice that of their white counterparts. It eliminated teenage pregnancies and variables linked to the poverty paradigm in viewing the BIM phenomena and instead focused on eight black middle-class, professional, educated, married women between

124

Chapter 8

the ages of twenty-nine and thirty-four to explicate material that would help in better understanding those factors which contributed to adverse birth outcomes in their pregnancies.

Rethinking the Problem The poor birth outcome for each woman in this study was linked to history, culture, and familial risk factors, complicated interactions with environment, possible pre-existing medical conditions, individual characteristics and race. Each pregnancy story contained the influences of most of these converging factors, and as it is for all women, the pregnancy was either a planned or unplanned interruption of a life in progress. It was the life in progress of these eight black women that this research aimed to capture in understanding those issues, attitudes, decisions and factors implicated in their poor pregnancy outcomes. The previous chapters gathered the recollections of important issues which impinged on the lives of the women, while progressively going through the stages of their pregnancies, key in understanding what their pregnancy stories might teach us about why they suffered infant loss, and how to reduce the risks for other women. This is of particular importance since the causes of preterm labor are largely unknown. Medical professionals cannot accurately predict a preterm delivery, although several maternal and obstetric characteristics (race/ethnicity, psychosocial, medical issues, etc.) are known to increase the risk. In fact, many experts in the field of research and obstetrics have expressed BIM as their Waterloo; a realization that the efforts to reduce the rate of BIM have failed, with rates for over the past twenty years averaging 14.0 with a persistent sustained disparity of over 2.2 between black and white IM rates, and little to no solutions in sight. The major research focus for over the past fifteen years on the influence of stress responses to a hostile social environment (racism) certainly helps to explain an overarching factor implicated in BIM, corroborated by much of the findings in this study. However, this explanation also makes the solution to the problem feel insurmountable, a feeling supported by failed efforts. This could not be better illustrated than by the response a reviewer provided to Harvard’s David Williams and colleagues of the National Institute of Health on a funding proposal to examine whether perceived racial discrimination coupled with inequities in medical care delayed stroke recovery in Latinos. The reviewer asserted, “It is not a good investment of NIH dollars to study racism, because even if we fund something, there is nothing we can do about it.”

Lessons Learned

125

The realization of where we are in redressing this phenomenon can fuel different actions. I assert, along with others who have lived with this subject for years, and worked with women who have experienced infant loss, that black women cannot afford to wait for more research or policy level initiatives (albeit important components to any effort to redress BIM) to take action in positively changing the BIM trend. This brings me to an important point. There is a shift in thinking in relation to BIM, which is more focused on the pathways of fetal distress based on the mother’s obstetric assessment, her maternal health. The fetus cannot thrive in an unhealthy intrauterine environment. Therefore, it makes sense that efforts focus on bringing about the optimal intrauterine conditions to nurture and sustain the development of a healthy fetus. As Dr. Michael Lu, an associate professor in UCLA’s School of Public Health, and a practicing OB/GYN physician states, “In the context of all the discussions and deliberations about health care reform, it’s time to do some rethinking about how we can close that gap (IM disparity). Part of that thinking is focusing on the maternal health of the mother, not only during pregnancy, but during the course of her life.” The findings in this study caused some re-adjustment in my thinking on the issues attached to BIM and this life-course perspective, especially in light of decades of unsuccessful efforts. The findings suggest that many of the factors implicated in BIM are modifiable. The women affected by the problem are not the cause of the problem, but can exert steps to remedy the problem. My interest here is to convert the significant findings from this study into lessons which can lead to changes on the individual level. Small and consistent changes can yield big and enduring results, but will require a peeling away of many issues to get to those factors which are within an individual’s control. The first step in reducing BIM starts with increasing awareness.

The Awareness Gap There were two participants in this study who had prior knowledge of the issue of BIM. The lack of awareness about BIM in the black community across all socioeconomic levels is astounding, regardless of the reasons. The difficulty of BIM rising to the level of a social problem worthy of attention and redress undermines any effort to change the trajectory of the high persistent IM black/white disparity. If those that are most affected are not aware that the problem exists, how do you begin the arduous efforts toward the elimination or reduction of the disparity? We know that past efforts to reduce the IM disparity (i.e., increased access to prenatal care, neo-natal advances in medicine, large education campaigns, etc.) have not yielded expected outcomes. There is little disagreement that such efforts have merit, but the fact

126

Chapter 8

remains, as mentioned, that the average BIM rate for the past twenty plus years is 14.0. There is some good news. More recent efforts to close the BIM awareness gap, especially on the local levels are yielding positive results. The Office of Minority Health’s report (2010) found that African-American’s awareness specifically around the impact of the infant mortality disparities in their own communities increased from 39 percent in 2009 to 56 percent in 2010. Campaigns such as the “Healthy Babies Begins with You” and the Preconception Peer Education (PPE), program, which aims to educate the black community starting with high school and college students on the problem of BIM and related issues, are contributing to increasing awareness and education on issues related to maternal health.4 Initiated by the Office of Minority Health, the plan is to expand the replication of the model. The effective use of technology (Twitter, online videos, Facebook, Google+, blogs, etc.) can assist in connecting groups of people interested in working on the same goal, and in reaching thousands through viral growth, while magnifying the importance of the cause. Increasing awareness provides the opportunity to educate and to address issues related to maternal health prior to pregnancy planning. It provides opportunities for future mothers and fathers to make needed shifts on how they view maternal health, which will influence how their children will view maternal health. In duplicating effective models the opportunity to make in-roads in helping to reframe the thinking for a generation of black women and men on issues related to having healthy babies can change the trajectory of the IM disparity. The awareness gap is closing. The duplication of successful models is achievable. Focused and consistent efforts on local levels can lead to significant changes in closing the awareness gap.

Education: When Should the Conversation Start? The conversation starts during childhood. Little girls start to talk about how many babies they want to have long before they start to talk about getting married or what they want to be when they grow up. It is a natural part of their childhood fantasy with playmates and with parents. It may also represent the first opportunity for parents to introduce age appropriate realities on having babies, along with ideas on the importance of eating healthy now for a healthy pregnancy and baby in the future. How many of us remember our parents touting the value of eating carrots for good eye-sight, which we still believe and will or have relayed that same message to our children. Similar-

Lessons Learned

127

ly, the idea of eating vegetables and healthy foods for healthy babies is a message which begins to introduce ideas attached to maternal health. Early conversations also provide the opportunity for assessment and correction, especially in light of this high-tech world. I am reminded of the commercial where a mother and her daughter sit in front of the lion’s cage while at the zoo. The mother shows her little girl (she appears to be around four) how easy it is deposit a check using her smart phone. A picture of the check appears on the phone magically and the transaction is completed by clicking a button. The mother then turns the camera towards the lion to take a picture, and the frantic child logically concludes that this means the lion would be transported to the bank. The mother quickly offers a correction on how it works. How complicated it must be for a child with a fantasy life layered with what appears to be magic. The stork delivering a baby, the “bundle of joy” to the door-step is now replaced by just taking a picture of a baby on a smart phone and clicking “send” underscoring the importance of adult/parent leading clear and age appropriate messages on making and having a baby, along with added consistent messages in relation to preparedness for healthy births. There are additional benefits to such early conversations on health and healthy babies. Such conversations are precursors for dealing with more difficult issues pertaining to sex, which is not a conversation parents should relinquish to others. Additionally, such conversations are important in the development of healthy body-image and sense of self; strongly influenced by parents. There are opportunities here for parents to help their children learn to value their bodies, supporting the importance for lifelong care. Education on maternal health and healthy babies starts during childhood.

Major Lessons Learned Pregnancy Planning As discussed in chapter 1, there is an early internal private conversation women have about having a baby which their husbands are not privy to; one of the first findings to surface in this study. Many women of all races have confirmed this to be true, and this certainly does not seem unusual or problematic, except as explained, when the decision is void of situational awareness. However, what was also revealed early in this study was that joint planning around pregnancy did not occur until some time after the personal decision was made by the women, and there was no indication that such planning involved extensive conversations or included many of the areas recommended by family planning professionals.

128

Chapter 8

Generally, it is a good idea for couples planning on getting married to have beginning conversations on family planning. Having early and substantive joint conversations on pregnancy planning encourages and supports involvement of spouse in the pregnancy experience. It also allows each partner to identify critical areas of concern, communicate expectations around roles and discuss anticipated changes a pregnancy will bring. It is important that both be wiling to push the “reset” button if it is evident that there is a lack of alignment on important issues. Professionals also recommend that women see their doctor before they conceive for a pre-conception examination and to review their medical history. This is also an opportunity for the women and their spouse to ask questions, and to also assess possible risks. In addition to a pre-conception examination, a meeting with a Family Planning Specialist will help to identify issues that could be more comfortable to discuss with a third-party. For example, being guided to appraise the reasons for wanting a baby, the timing of the pregnancy, with special attention given to finances, living arrangements and careers, an understanding of the role that religious and ethnic differences will play in relation to parenting, (i.e., discipline) flexibility around lifestyle changes, previous pregnancy or infertility concerns, and the capacity to possibly accommodate an infant with special needs. This is also an opportunity for the professional to underscore the benefits of spouse’s involvement throughout the pregnancy for optimal birth-outcomes and to assist the couple in identifying ways for such involvement to occur. It is important to note that none of the women in this study expected to experience medical challenges in relation to their pregnancy. Although the couples were professionals, two salaries were necessary in maintaining their living status, and therefore the women had to continue to work despite feeling sick throughout their pregnancies. Additionally, one of the strongest unexpected finding was the expressed feelings of frustration, disappointment and vulnerability attached to the lack of financial options related to time off during, but especially after pregnancy by the majority of the women in this study. The strength of both findings highlights the need for couples to agree on a strategy to make certain that extended time off is an option. Such planning might mean adjusting wishes in relation to the number of children, delaying having a baby, and/or lowering other expenses to accommodate increased savings. Pre-conception examinations are helpful in answering questions and in identifying individual risks. Conversations around having a baby should actually commence between people planning to have a family. This will help to surface issues which might require resolution before marriage. Pregnancy planning should include the spouse/father/partner early in the process and cover a range of relevant issues (indicated above) openly and honesty.

Lessons Learned

129

If extended time off is deemed important, this may require early financial planning and difficult choices.

History and Influences: Changing a Mind-Set This part of the discussion refers to a mind-set, a “programming” in response to atrocities of a racial history very much tied to how black women perceive themselves and the burdens they accept. Harrell (2000) discusses racism-related coping styles as established adaptations that evolve in the service of coping with racism. It includes what Root (1996) describes as the “transgenerational transmission,” a socialization of trauma-related behavior and beliefs about the world; the impact of historical trauma relayed across generations, evident in the accounts of the women in this study. Not that long ago the view held by the dominant society on black women relative to childbearing was that they were unrestrained wanton breeders, or calculating breeders for financial gain.5 These were the stereotypes about black women their coping styles aimed to counter. For example: assuming a business as usual attitude while pregnant in the face of much distress to prove oneself as “able,” deciding to take on a pregnancy, a full-time job, with other young children because that is what “strong black women do,” and demonstrating independence to a fault because, “you must rely only on yourself” no matter the cost are a few examples of the type of added burdens the women in this study placed on themselves. The difference is now we know that such coping styles create significant burdens attached to stress responses which were and are harmful to one’s health. Most black women, like the women in this study, are probably unaware that much of their outlook on life and expectation of self has roots in a racial history. Therefore, a suggested first step in getting rid of these harmful burdens is to understand both the source and how they get expressed. The accounts of the women in this study revealed that their mothers passed on coping-styles passed down by their mothers who believed they would allow their daughters to succeed in the face of racial adversity. However, the resulting poor health outcomes were not part of the plan. The women in this study recognized the existence of stress in their lives. Although their accounts revealed coping styles with a direct tie to their racial history, an understanding of the origins and the consequences of accepted weighty burdens were not part of their thinking. In addressing maternal health it is necessary for black women to do an honest appraisal of the burdens they accept stemming from a need to prove one-self worthy. It is not easy to become free of stress associated with generations of taught messages on how to respond to the generalized existence and experience of racism. Harrell (2000) suggests the importance of engaging in an appraisal process

130

Chapter 8

to understand the outcomes related to stress (i.e., poor maternal health) is an important first step. The next steps would include the employment of external and internal mediators that would “buffer” the impact of racism and help in reshaping responses. The internal mediators could include attachment with a larger racial, cultural, spiritual community in helping to expand insight into one’s life’s purpose, and develop core convictions which provide the framework for inner guidance. The external mediators could include an array of community support resources available to the individual. It is important to understand that “re-programming” of unhealthy coping styles will not occur immediately. It requires persistent inner conversations and the development of an internal detector to monitor and re-shape responses. Engage in a personal appraisal process to both recognize stress and to understand health outcomes related to stress. Discard ineffective coping-styles which have their roots in a racial history and are harmful to general and maternal health. Use external and internal mediators to “buffer” the impact of racism and to help in reshaping responses deleterious to health.

The Dangerous Burden of Stress It is interesting to note that the majority of the women in this study recognized stress in their lives, but such realization was obscured by a lack of concern about the harm of such stress on their health and the health of their fetus. There is a difference between life stressors which occur during daily interactions with one’s personal and broader environment, and “acquired” stress as a result of taught responses to counter racism, discussed above, although the distinctions are often blurred. The latter can best be described as embedded stress, and all other added stress serves to compound the existing stress load, resulting in increased health vulnerability. Denying the affect of stress is dangerous, as it hinders efforts to ameliorate stress for improved general health, and improved maternal health for positive birth outcomes. The lesson here is simple: Women must give value to the consequences related to stress, and be open to making necessary changes to achieve stress reduction.

Pregnancy: Life’s Interruption

Lessons Learned

131

Earlier I referred to a pregnancy as interrupting a life in progress to convey the reality that a woman’s life continues as she assumes her role as worker, mother, wife, daughter, sister, etc. while pregnant. The expected and unexpected events that normally occur will continue to occur as illustrated in this study as the women experienced a number of key events representing varying degrees of challenge. However, it is how women both prepare and deal with these life’s events with respect to maternal heath that is important. The fact that we all are born into this world through the same process, tends to diminish the great wonder pregnancy and birth represent. The changes occurring inside a woman’s body as her fetus grows are nothing less than miraculous. This is not business as usual although the women in this study and most black women would have you think so because of issues discussed in the prior paragraphs. A maternal health perspective should emphasize the need for women to add nutritional armor to their immune system, while simultaneously introducing a regiment of relaxation exercises, and practicing new ways of responding to stressful events in order to mediate the effects of daily external stressors on the changes occurring internally. Additionally, the reduction of responsibilities around child-care and domestic tasks should occur to accommodate increased time for self. For pregnant women, achieving a sense of internal calm, and introducing foods to strengthen physical health while reducing responsibilities wherever possible will contribute to improved maternal health. Appreciate the miraculous changes occurring internally during pregnancy and support such changes with relaxation activities designed to bring a sense of emotional evenness. It is important to introduce foods that will boost the immune system. Appraise and adjust expectation of self to discard unnecessary burdens.

Doctor Selection and Patient/Doctor Relationship The life-course approach to maternal health seems consistent with the view of identifying a doctor to address gynecological health long before the need for obstetric care. It is interesting that only one woman in this study had a long-term relationship with her doctor and he was the only doctor to order specialized testing. Although the women in this study were initially focused on selecting doctors of concordant race and gender, ultimately these factors did not seem to play a significant role in the perceived quality of their overall prenatal care. However, I cannot help but to wonder if Alana had known her doctor for a protracted period, what the probability of her talking to him/her about her abusive relationship would have been? For that matter, would the

132

Chapter 8

medical complaints (warning signs) made by the majority of the women been received and dealt with differently as a result of a long-term relationship with their physicians? Additionally, as discussed, the majority of the women in the study sensed that something was wrong in their pregnancy, a common theme I heard from a number of women, which speaks to the presence of an “internal alarm” which was not valued by the doctors, and subsequently diminished in value by the women. Perhaps all of these issues could be addressed by rethinking the amount of power imbued in physicians even before they have demonstrated competence. Patients and physicians have a common view of where physicians are placed in the present patient/physician relationship model. Both views place the doctor as the central player in patient care, a reflection of medical training. Patients willingly relinquish almost total authority of their medical care to physicians, rather than viewing themselves as a principal player entering an extremely important and mutually beneficial partnership. It is particularly difficult for women entering a patient/physician relationship during pregnancy to make a change in doctors if she is not satisfied. However, there are a number of concerns which emerged from this study in relation to doctor selection and quality of care converted into questions that might prove useful in selecting and assessing a doctor. The first has to do with the nature of the physicians’ practice. Is it a group practice which could mean that patients are seen by different doctors during the course of pregnancy? This is an approach that is acceptable for some women but not for others. However, it is important that such information is gleaned prior to involvement. How easy was it to get an appointment? Am I treated with respect by the staff? Are my telephone and/or email messages returned promptly? What is his/her standing among peers within the same medical specialty? Does he/she actively listen to me when I speak? Do I understand him/her when they speak? Are my questions received in a respectful manner and answered in a thoughtful and sensitive manner? Is there evidence of racial biases or held stereotypes in his/her statements and/or attitude? Such questions help to reframe the thinking about the patient/physician relationship model. Additionally, it is clear that increased collaboration between physicians and other health professionals is indicated for training on the kind of information women are seeking, and the kind of information they (physicians) need from their patients in order to better align communication to match the needs of the patient. Sensitivity training in relation to physicians’ attitudes about BIM and how such attitudes influence types of intervention and quality of patient care is also indicated. The patient is the central player in the patient/physician relationship mode, not the physician.

Lessons Learned

133

The identification of increased opportunities by other professional disciplines (i.e., social workers, family planning nurses, etc.) to offer their expertise and corroborate with physicians appears indicated for the improvement of the overall quality of pre-natal care and to better identify and reduce individual risks.

Combining Self -Risk Assessment with Common Sense One of the strongest findings in this study was the degree to which both maternal and paternal familial history was implicated in poor birth outcomes. It is clear that black women need to be well informed on those factors which increase risks, and the information in this book helps to address that need. Knowing the risks attached to infant loss helps women assess their overall state of well-being during pregnancy. For example, a woman‘s risk for poorbirth outcomes is higher with a familial history linked to poor birth outcomes. Such knowledge makes persistent medical symptoms more difficult to explain away with statements like, “all is fine.” If Alana and Freddie had understood that their weight, in combination with maternal and paternal familial histories, and other risk factors increased their chances for a poor birth-outcome, they might have made different decisions in participating in precipitating events/activities discussed in chapter 5, which appeared linked to their medical emergency. In fact, participation in precipitating events for all of the women in this study could have been avoided had they understood and appraised their risks. The point here is that if women understand the risks associated with poor-birth outcomes in general (i.e., smoking, alcohol consumption, drug use, chronic stress, excessive exercise, etc.) and know their specific risk factors (i.e., familial history/poor birth outcomes, over-under weight, shortcervix, mental illness, diabetes, HBP, etc.) they then have the information needed to make appropriate decisions. Additionally, they also have the information needed to implement changes in partnership with their doctor. A risk reduction plan (including much of what was discussed in preceding paragraphs) should be developed by the patient and presented to the doctor for his/her expert input; it does not have to occur in reverse. Women should understand risk factors associated with BIM and their individual risk-factors. Then responsible action in partnership with their doctors should occur to reduce risks.

134

Chapter 8

Staying Informed A pregnancy is a life changing event and as such requires a high level of diligence in staying educated and well informed on ways to reduce the chances of having a poor birth outcome. For example, the new drug Makena is showing promising results and having knowledge of all the issues attached to this and other new drugs in the pipeline will empower women to make demands on their health care provider and sound decisions in relation to their maternal health. There are other scientific breakthroughs on pregnancy issues and keeping abreast on such developments will be beneficial to woman planning to have children. Stay up-to-date on maternal health issues, including the introduction of new drugs and interventions linked to pregnancy outcomes.

Relationship with Spouse The emotional support rendered by a spouse is viewed as a protective factor against adverse pregnancy outcomes. It should be noted that emotional support during pregnancy can occur even when problems exists in the marriage. For example, the majority of the women cited that their relationship with their spouse was problematic during their pregnancy, and for some, throughout their marriage. The problematic issues cited included infidelity, abuse, but mostly poor-communication. However, the majority of the women generally felt supported by their spouse. It is clear that pregnancies exasperate problems already present in relationships, and for some is the source of problems. If a marriage is suffering under the weight of problems; planning to have a baby is obviously not a good idea. Outside help (i.e., spiritual, professional) is probably indicated when striving for a healthy thriving marriage is no longer viewed as important by one or both parties. It is interesting to note that most of the women in this study who cited problematic issues remained married to their spouse and were together even during the time of follow-up contact. There were two exceptions, one relationship finally ended due to a history of abuse (Alana), and in the other the spouse’s leave was completely unexpected (April). It would appear that the problems perceived by the majority of the women were exasperated by the pregnancy; as such problems did not subsequently reach a level resulting in separation or divorce. It is also interesting that this study revealed a peripheral positioning of the spouse by most of the women from early pregnancy stages with no apparent resistance by the spouse. It is important that the messages of inclusion

Lessons Learned

135

in the pregnancy experience be clear and consistent to gain any benefit of spousal protection against an adverse pregnancy outcome. Spousal emotional support is a protective factor against adverse pregnancy outcomes. Therefore, it is important for women to encourage their spouses to have a significant role during the course of the entire pregnancy. Women can expect relationship issues with their spouse to feel exaggerated during pregnancy.

Seeking Professional Mental Health Services Stated simply, the connection between body and mind and the affect of stress on both is well documented. For a pregnant woman, her psychological state affects her fetus, and therefore is of particular importance. For example, Tina’s description of her daily functioning revealed symptoms attached to depression, which she was experiencing for some time, undoubtedly distressing her pregnancy, but no professional help was sought. Her lack of action might reflect the sentiment of the black community where a tremendous amount of stigma is attached to receiving mental health services. One study found that the proportion of African-Americans who were not inclined to receive mental health treatment was 2.5 times greater than the proportion of whites.6 Yet this topic is of particular importance, especially for pregnant women given what we know about the effects of stress on the physiological/psychological state, and consequences on the fetus. It is important to note that under the Affordable Health Care Act, such services in the year 2014 will be covered at parity with medical and surgical benefits. It is important that professionals work with consumers in addressing stigma issues, so that attitudes better match policies and benefits.7 It is clear that most of the women in this study could have benefitted from involvement with professional mental health services if only for a short period not only to address the problem discussed above, but for help in the grieving process, and to resolve issues that could interfere with a subsequent pregnancy. Yvonne shared her anxiety about, “what if this happen again,” fears which went unresolved as she admitted to needing professional help but did not follow through on securing services. The trauma attached to an unexpected infant death cannot be overstated. As April stated, “I felt like I was hit by a Mac truck.” Yet, women may receive messages that do not support their need to grief an early pregnancy loss. Their loved ones and doctors may tend to minimize the loss with statements like, “you will get pregnant soon again.” It is difficult for women to receive support on how they are feeling even from those close to them. Dorothy was the exception. She shared movingly feeling devastated during the celebration of the first Mother’s Day following the death of her infant

136

Chapter 8

boy. She found it difficult to function without breaking down. “I knew after that that I needed help.” The presence of issues warranting professional help for several of the woman in this study was troubling. Such issues were clearly interfering with their lives and adding stress to their pregnancies. It is important that a life course perspective to reduce BIM include an assessment for mental health services. This point underscores the importance of women having a protracted and effective working relationship with their OB/GYN. If he or she understands who their patients are, they are in a better position to assess when other services are necessary. The fact that the Obstetrician is often the first person in the position to see the woman in the context of pre-natal care, again highlights the point made earlier for increased corroboration between physicians, in this case, mental health professionals. It also underscores the importance of physicians asking certain questions and holding substantive conversations with patients to gain a sense of their emotional state. For example, I do not suspect that it would have been difficult to ascertain that Tina was in need of mental health services if certain questions had been asked. However, let me be clear, a woman experiencing mental health problems does not necessarily hinder her ability to understand that she is need of help and to secure professional mental health services, (i.e., Dorothy) or to initiate the conversation with her doctor on how she is feeling emotionally. The benefits rendered by seeking professional help to assist in resolving a host of mental health issues far outweighs any stigma attached to such services. It is important to initiate conversations with physicians on matters of concern in relation to psychological health. Do not diminish the need to grieve which may require some kind of ritual to honor the loss, and/or professional help. Do what feels right and what will bring about some resolution.

Making Changes after Infant Loss Understanding individual risks was mentioned in prior sections. Its importance is demonstrated in Dorothy’s case, where medical interventions were successfully applied much earlier in relation to a confirmed medical condition in conjunction with significant changes in her work schedule during her subsequent pregnancy. Her subsequent pregnancy was full-term, and this was true for three other women who had subsequent full-term pregnancies without complications. All of women with births following their loss made significant life changes involving changes in their weight, workschedule, and living circumstances, compared to the other women who reported little to no changes in their lives. However, it is possible in the latter

Lessons Learned

137

cases the couples’ decision not to have a subsequent pregnancy might have included other factors. Nonetheless, in this study the association between significant post-infant changes and subsequent full-term pregnancies underscores the significance of individual women effectively using information about their health risks, eliminating elements of their lives that were problematic and actively pursuing healing in the face of their loss in successfully defying their individual poor-birth outcome trajectory demonstrated by research. Following the experience of infant loss an honest self-appraisal of key aspects of one‘s life is helpful in restoring psychological and physiological well-being regardless of plans for a subsequent pregnancy.

In Closing I have spent a considerable amount of time living with this topic, and therefore I take some liberties in the above discussions, but all are undergirded by expertise in the fields of mental health and education, supported by research, and feedback from other women. This chapter imparted lessons learned directly connected to the major findings in this study, and indentifies steps to assist in “rethinking” how we might go about closing the IM disparity between black and white infant deaths. The resources available at www.reducingBIM.com will assist black women, black men, parents, and professionals in expanding their knowledge on current and pertinent issues related to BIM. Dr. R. David’s, neonatal specialist and researcher, correct assertion which opened this book, “There is something about growing up as a BlackAmerican female in the United States that is not good for her childbearing health,” should not be the end of the story.

Notes 1. T.J. Mathews and Marian F. MacDorman, “Infant Mortality Statistics from the 2009 Period Linked Birth/Infant Death Data Set,” National Vital Statistics Report, 2013http://www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_08.pdf (accessed February 2013). 2. CIA, “Infant Mortality Rate,” The World Factbook 2012, https://www.cia.gov/library/publications/the-world-factbook/fields/2091.html (accessed January 2013).

138

Chapter 8

3. Franklin W. Goza, et al. “Racial Differences in the Relationship between Infant Mortality and Socioeconomic Status,” Population Research Policy Review 13, no. 4 (2005): 399-410. 4. Office of Minority Health, Preconception Peer Education, 2010 http://minorityhealth.hhs.gov/templates/browse.aspx?lvl=3&lvlid=566 (accessed April, 2012). 5. Rickie Solinger, Wake Up Little Susie: (New York, N.Y. Routledge, 1992), 2084. 6. SAMHSA “Mental Health, Culture and Ethnicity,” Mental Health Report 2001, http://www.ncbi.nlm.nih.gov/books/NBK44251/#A1626#A1626 (accessed January 2010). 7. According to the Department of Health and Human Services, the Affordable Care Act will provide one of the largest expansions of mental health and substance use disorder coverage in a generation. Beginning in 2014 under the law, all new small group and individual market plans will be required to cover ten Essential Health Benefit categories, including mental health and substance use disorder services, and will be required to cover them at parity with medical and surgical benefits. The Affordable Care Act builds on the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA, or the federal parity law), which requires group health plans and insurers that offer mental health and substance use disorder benefits to provide coverage that is comparable to coverage for general medical and surgical care.

139

Appendix A

Glossary of Terms IM Infant Mortality

IMR Infant Mortality Rate: the rate of infant deaths per 1,000 live births before first birthday.

BIM Black Infant Mortality: the death of infants born to black women who die before their first birthday.

LBW Low Birth Weight: Babies born weighing less than 5 pounds, 8 ounces (2,500 grams) are considered low birth weight.

Neonatal The first 28 days of an infant’s life.

Perinatal The 20th to 28th week of gestation and ends 1 to 4 weeks after birth.

Gestation The nine-month period of pregnancy from conception to birth.

Preterm Birth Less than 37 weeks of gestation.

Prematurity Less than 37 weeks gestation, and, less than 2,500 grams.

141

Appendix B

Biographical Data Pseudonym Education Profession

Age

Trimester Births Births of loss prior after

Yvonne Kevin

Masters

Admin Scientist

33 33

2

2

0

Dorothy Derrick

MD

Physician Physician

32 35

2

0

1

Alana Phil

Masters

Counselor Technician

30 29

3

2

1

April Charles

Masters

Counselor 29 Entrepreneur 35

2

2

2

Wileta Clay

College

Executive Producer

34 34

2

1

0

Freddie Eric

College

Manager Manager

31 32

3

0

1

Tina Frank

College

Clinician IT/Specialist

33 34

2

1

0

Linda Jason

Masters

Admin Manager

34 34

3

1

0

143

Appendix C

Interview Guide Introduction Thank you again for agreeing to participate in this study. As I mentioned, many women like you, who have suffered the lost of their infant do not realize that Black Infant Mortality is a significant problem in the United States that researchers are trying to understand. It is my hope that in spending time with you and others like you, this study might yield information which will help us gain a deeper understanding as to why so many Black-American women are losing their infants before the age of one. Again, please understand that you do not have to answer any question that you do not want to answer. 1. I would like to begin our conversation by talking about the beginning stage of your pregnancy. Please share with me how you felt when you first thought you were pregnant. Probes: Was your pregnancy planned or unplanned? Was this your first pregnancy? How long after when you first thought you were pregnant did you confirm that you were pregnant? How was it confirmed? Who was the first person you told? What was their reaction?

2. At what point in your pregnancy did you decide to seek pre-natal care? Probes: What made you decide to go at that time? Was it the same time frame you used in seeking pre-natal care during prior pregnancies? Was it a similar experience as in your __ other pregnancies?

3. Ok. So in securing prenatal care how did you go about selecting your doctor? Probes: Were race, gender, age, years of experience, location, insurance factors considered?

4. Tell me about your first appointment; how did things go? Probes: Were you pleased with the initial report provided by your doctor? Were there things said that concerned you? How often did you go to the doctor after this first visit? How did this experience compare with prenatal care during past pregnancies?

144 Interview Guide

5. Did someone accompany you on your first prenatal care visit? Probes: Did you talk with this person about how you felt about this visit?

6. So following your initial appointment you were seen __ times during the course of your pregnancy. During these visits did you feel that you had formed a relationship with your doctor? Probes: Were you able to comfortably communicate with your doctor? Did you ask questions? Did you understand your doctor? Were you satisfied with responses to your questions? Were there any issues related to your doctor’s style, office staff, hours of operation, etc. that concerned you?

7. Did you have reasons to have any concerns about this pregnancy? Probes: Familial history of adverse pregnancy outcomes, both maternal and paternal.

8. Did you seek any emergency and/or other medical care due to a problem(s) during the course of your pregnancy? Probes: When? How did you feel about your doctor’s response to your medical emergency or problem/complaint? Did you have similar complaints during prior pregnancies? How was it resolved?

9. Overall, how do feel about the quality of care you received during the course of your pregnancy? Probes: Do you feel that age or race of your doctor, or the facility where care was rendered played a role in the quality of care? Do you feel that your race or gender played a role in the quality of care you received? OK. Thank you. We have now reached the half-way mark of the interview. I would like us to turn toward understanding how your pregnancy impacted other areas of your life.

10. During your pregnancy how were things going on your job, in your relationship with your husband, and family? Probes: Can you recall any situations that were particularly pleasing or stressful?

11. Overall, how would you describe your disposition during your pregnancy? Probes: Was your attitude the same as it was prior to your pregnancy, or did you notice a difference?

Interview Guide

145

12. In your daily life did you continue to do the same things that you did prior to learning that you were pregnant? Did you notice any changes, or did you implement any changes in your daily life patterns during your pregnancy? Probes: Work schedule and reasons, sleep patterns, eating habits, significant change in diet, significant weight gain or loss? Did you do any traveling or attend any large functions during the last trimester of your pregnancy?

13. Thank you. OK. I am interested in understanding what happened on the day of your lost? How did things unfold? Probes: Where were you? What year, month and day was it? What was the time? Who was with you?

14. What explanation was provided by your doctor? 15. As you look back are there questions that you now wonder about that you did not give much credit to before? Probes: Do you have any, thoughts or feelings about why it happened?

16. Did you seek any kind of counseling after this event? 17. If so did you find it helpful? 18. Do you have any advice to share? 19. What is the most valuable thing learned as the result of this experience? Thank you so much. We have completed the interview. As mentioned, I will probably have subsequent contacts with you and you should feel free to call me if you have any questions, or if there is additional information you would like to share. Before we end please answer a short demographic questionnaire, which will be added to the prescreening information already collected. 1. Your Age__ 2. Age of Spouse__ 3. Your level of education: A) High School Diploma__ B) Some College__ C) Bachelor’s Degree__ D) Master’s Degree__ E) PhD__ MD__ F) Other, please specify 4. Occupations: Self: ___________________ Spouse: ________________

146 Interview Guide

5. Household earnings: A) 25,000- 45,999__ B) 45,000-64,999 __ C) 65,000-84,999 __ D) 85,000-104,999__ E) 105,000 or more__ 6. Do you have medical insurance coverage? Yes___ No___

147

Bibliography Allen, Jessie. “Remedy for Unthinking Discrimination.” Brooklyn Law Review 61 (Winter 1995): 1200-1345. American Psychiatric Association 4th Ed. Diagnostic and Statistical Manual of Mental Health Disorders DSM-IV Manual. Washington, DC: APA, 2000. Anderson, N.B. “Racial Differences in Stress-Induced Cardiovascular Reactivity and Hypertension.” Psychological Bulletin 105, no.1 (1989): 89-105. Barnes, Glenda L. “Perspectives of African-American Women on Infant Mortality.” Social Work Health Care 47, no. 3 (2008): 293-305. Behrman E. Richard, and Adrienne S. Butler, eds. “Preterm Birth: Causes, Consequences and Prevention.” Board on Health Sciences Policy Report, 2007. http://books.nap.edu/catalog.php?record_id=11622 (accessed February 2009). Bennett, Ian, Julia Switzer, Abigail Aguirre, Kelley Evans, Frances Barg. “Breaking it Down: Patient-Clinician Communication and Prenatal Care among African American Women of Low and Higher Literacy.” Annals of Family Medicine 4, no. 4 (August 2006): 334-340. Benz, Jennifer K., Valerie A. Welsh, Oscar J. Espinosa, Angela Fontes, Margrethe Montgomery, Nichole Machata, Garth N. Graham. “Trends on US Public Awareness of Racial and Ethnic Health Disparities from 1999-2010.” Office of Minority Health, 2010. http://minorityhealth.hhs.gov/assets/pdf/checked/1/2010StudyBrief.pdf (accessed July, 2011). Berg, C.J., and L.S. Wilcox. “The Prevalence of Socioeconomic and Behavioral Characteristics and their Impact on VLBW in Black and White Infants.” Maternal and Child Health 5, no.2 (June 2001): 75–84. Berg, C.J. “Antenatal Corticosteroid Therapy in Premature Infants.” Archives of Gynecology & Obstetrics 271, no.1 (January 2005): 26-32. Betancourt, Joseph R., Alexander, R. Green, J. Emilio Carrillo, Elyse R. Park. “Cultural Competence and Health Care Disparities: Key Perspectives and Trends.” Health Affairs 24, no. 2 (2005): 499-505. Blanton, Lillie, and Catherine Hoffman. “Race Ethnicity and the Health Care System: Public perception.” Medical Care Research 57, no.218 (Nov. 2000): 5-10. Camphina-Bacote, J. “A Model and Instrument for Addressing Cultural Competence in Healthcare.” Journal of Nurse Education 38 (1999): 203-230. Carter, Robert T. “Racism and Psychological and Emotional Injury: Recognizing and Assessing Race-Based Traumatic Stress.” The Counseling Psychologist 35, no. 1 (January 2007): 13-105. Cassel, John. “The Contribution of the Social Environment to Host Resistance.” American Journal of Epidemiology 141, no.9 (1995): 798–814. Chen, Jersey, Safi S. Rathore, Harlan M. Krumholz. “Racial difference in the Use of Cardiac Cauterization.” New England Journal of Medicine 345, no. 11 (September 2001): 839. Chen, Pauline. “Doctor and Patient, Bridging the Gap,” New York Times, July 16, 2009. CIA, “Infant Mortality Rate,” The World Factbook 2012, https://www.cia.gov/library/publications/the-world-factbook/fields/2091.html (accessed January 2013).

148 Bibliography Clark, Rodney. “Racism as a Stressor for African-Americans.” American Psychologist 54, no. 10 (October 1999): 805-816. Coles, Roberta L., and Charles Green, eds. The Myth of the Missing Father. New York: Columbia University Press, 2010. Collins, Francis S. The Language of Life. New York: Harper Collins Publishers, 2010. Cooper, Lisa P., and Debra Roter. “Patient-Provider Communication: The Effects of Ethnicity on Process and Outcomes of Health Care.” Institute of Medicine Report, 2003.www.nap.edu/openbook.php?record_id=10260&page=552 (accessed March 2009). Cromwell, Jerry, Nancy McCall, Joseph Burton, Carol Urato. “Race/Ethnic Disparities in Utilization of Lifesaving Technologies by Medicare Ischemic Heart Disease Beneficiaries.” Medical Care 43, no. 4 (April 2005): 330-337. Crosby, Faye. “The Denial Of Personal Discrimination,” American Behavioral Scientist 27, no. 3 (January 1984): 371-386 Curtis, Patrick. “An Ethnographic Study of Pregnancy Counseling.” Clinical Social Work Journal 18, no. 3 (September 1990): 243-256. D’Angelo, Denise V., Brenda Colley Gilbert, Roger W. Rochat, John S. Santelli, and Joan M. Herold. “Differences Between Mistimed and Unwanted Pregnancies Among Women Who Have Live Births” Perspective on Sexual Health 36, no. 5 (September/October 2004): 192-197. Davis, James, A. and Tom. W. Smith. General Social Surveys, 1972-1990. Chicago: National Research Center, 1990. Drexler, Madeline. “How Racism Hurts: Literally.” The Boston Globe: July 15 2007. Duryea, Mary. “Winds and Trees: Lessons Learned from Hurricanes.” University of Florida: Urban Forrest Hurricane Recovery Series, 2007. http://edis.ifas.ufl.edu/pdffiles/FR/FR17300.pdf (accessed March 2011). Ehrenreich, Barbara, and Dedrick Muhammad. “The Recession’s Racial Divide.” The New York Times, September 12, 2009. Entringer, Sonia, R. Kumsta, D.H. Hellhammer, Patrick D. Wadhwa, S. Wüst. “Prenatal exposure to Maternal Psychosocial Stress and HPA Axis Regulation in Young Adults.” Hormone Behavior 55, no. 2 (February 2009): 292-298. Esplin, Sean, Bardett Fausett, Alison Fraser, Rich Kerber, Geri Mineau, Jorge Carillo, Michael Varner. “Paternal and Maternal Components of the Predisposition to Preeclampsia.” New England Journal of Medicine 34, no. 12 (March 2001): 867-872. Frey, Keith A., Shannon M. Navarro, Milton Kotelchuck, Michael C. Lu. “The Clinical Context of Preconception Care; Perception of Men.” American Journal of Obstetrics & Gynecology, Supplement B, no. 6 (December 2008): 389-395. Gates-Williams, Jan, Njieri, M. Jackson, Valata Jenkins-Monroe, Landon R. Williams. “The Business of Preventing African-American Infant Mortality.” CrossCultural Medicine-A Decade Later [Special Issue] 157, no. 3 (September 1992): 350-356. Gaudino James, A., Bill Jenkins, Roger W. Rochat. “Fathers’ Names: A Risk Factor for Infant Mortality in the State of Georgia.” Social Science & Medicine 48, no. 2 (January 1999): 253-265. Geronimus, Arline T. “Understanding and Eliminating Racial Inequalities in Women’s Health in the United States: The Role of the Weathering Conceptual Framework.” Journal of the American Medical Women’s Association 56, no. 4 (2001): 133-136.

Bibliography 149 Geronimus, Arline T. “The Weathering Hypothesis and the Health of AfricanAmerican Women and Infants: Evidence and Speculation.” Ethnicity and Disease 2, no. 3 (February 1992): 207-221. Gielen Andrea, Richard Windsor, Ruth R. Faden, Patrick O’Campo, John Repke, Mary Davis. “Evaluation of a Smoking Cessation Intervention for Pregnant Women in an Urban Prenatal Clinic.” Health Education Research 12, no. 2 (July 1997): 247-254. Giscombe, Cheryl, and Marci Lobel. “Explaining Disproportionately High Rates of Adverse Birth Outcomes among African Americans: The impact of Stress, Racism and Related Factors in Pregnancy.” Psychological Bulletin 131, no. 5 (2005): 662–683. Goldenberg, Robert L., and Dwight J. Rouse. “Prevention of Premature Birth.” New England Journal of Medicine 357, no. 12 (July 1998): 313-320. Goza, Franklin W., Edward G. Stockwell, Franklin W. Goza, Kelly Balistreri. “Racial Differences in the Relationship between Infant Mortality and Socioeconomic Status.” Population Research Policy Review 13, no. 4 (2005): 399-410. Gray, Ron G., Jamila Headley, Laura Oakley, Jennifer J. Kurinczuk, Peter Broaklahurst, Jennifer Howell. “Towards an Understanding of Variation in Infant Mortality Rates between Different Ethnic Groups in England and Whales.” National Primate Epidemiology Unit, University of Oxford, and Department of Public Health (November 2009): 1-9. Grieg, P.C., B.C. Robinette, W.N. Herbert, L.A. Teol. “Amniotic Fluid in Interleaking-10 Concentrations Increase through Pregnancy are Elevated in Patients with Preterm Labor Associated with Intrauterine Infection.” Journal of Obstetrics and Gynecology 173, no. 4 (October 1995): 1223-1227. Grote, Nancy K., Jeffrey A. Bridge, Amelia R. Gavin, Jennifer L. Melville, Satish Iyengar, Wayne J. Katon. “A Meta-Analysis of Depression during Pregnancy and the Risk of Preterm Birth, Low Birth Weight, and Intrauterine Growth Restriction.” Arch Gen Psychiatry 67, no. 10 (October 2010): 1012-1024. Harrell, Shelly P. “A Multidimensional Conceptualization of Racism-Related Stress: Implications for the Well Being of People of Color.” American Journal of Orthopsychiatry 70, no. 1 (January 2000): 42-54. Healy, A.J., F. D. Malone, L. M. Sullivan, T.F. Porter, D.A. Luthy, C.H. Comstock, G Saade, R. Berkowitz, S. Klugman, L. Dugoff, S.D. Craigo, I. Timor-Tritsch, S.R. Carr, H.M. Wolfe, D.W. Bianchi, ME. D’Alton. “Early Access to Prenatal Care: Implications for Racial Disparity in Perinatal Mortality.” Journal of Obstetrics & Gynecology 107, no. 2 (March 2006): 625-631. Herndl, Diane. “The Invisible (Invalid) Woman: African-American Women, Illness, and Nineteenth-Century Narrative.” Women’s Studies 24, no.6 (1995): 553-572. Hillier, Sharon. “Association between Bacterial Vaginosis and Preterm Delivery of a Low-Birth-Weight Infant.” New England Journal of Medicine 333, no. 26 (December 1995): 1737-1742. Hogan, Vijaya, and Cynthia Ferre. “The Social Context of Pregnancy for AfricanAmerican Women: Implications for the Study and Prevention of Adverse Perinatal Outcomes.” Maternal and Child Health Journal 5, no.2 (2001): 67-69. Iams, Jay D., Robert L. Goldenberg, Paul J. Meis, Brian Mercer. “The Length of the Cervix and the Risk of Spontaneous Premature Delivery.” New England Journal of Medicine 334, no. 9 (February 1996): 567-572.

150 Bibliography Jackson, Fleda M. “Race, Stress and Social Support: Addressing the Crisis in Black Infant Mortality.” Joint Center for Political and Economic Studies, Washington, D.C., 2007. Johnson, Rachel L., Debra Roter, Neil R. Powe, Lisa Cooper. “Patient Race/Ethnicity and Quality of Patient–Physician Communication during Medical Visits.” American Journal of Public Health 94, no.12 (December 2004): 2084–2090. Kiecolt-Glaser, Janice, K. Phillip, T. Marucha, William B. Malarkey, Ana M. Mercado, Ronald Glaser. “Slowing of Wound Healing by Psychological Stress.” Lancet 346, no. 4 (November 1995): 1194-1196. Kiecolt-Glaser, Janice K. Tamara Newton, John T. Cacioppo, Robert C. MacCallum, Ronald Glaser, William B. Malarkey. “Marital Conflict and Endocrine Function: Are Men Really More Physiologically Affected than Women?” Journal of Consulting and Clinical Psychology 64, no. 2 (1996): 324-332. Kost, Kathryn K., David J. Landry, Jacqueline E. Darroch. “Predicting Maternal Behaviors during Pregnancy: Does Intention Status Matter?” Family Planning Perspectives 30, no. 2 (1998): 79-88. Krieger, Nancy. “Racial and Gender Discrimination: Risk Factors for High Blood Pressure.” Social Science and Medicine 30, no. 12 (1990): 1273-1281. Kundhal, Kiran, and Pav S. Kundhal. “Cultural Diversity: An Evolving Challenge to Physician-Patient Communication.” JAMA 94, no.1 (January 2003): 289-294. LaVeist, Thomas A., K.J. Nickerson, B.V. Bowie. “Attitudes about Racism, Medical Mistrust, and Satisfaction with Care among African American and White Cardiac Patients.” Medical Care Research Review (Supplemental) 57, no. 1 (2000): 146161. LaVeist, Thomas, A., A. Nuru-Jeter, K.E. Jones. “The Association of Doctor-Patient Race Concordance with Health Services Utilization.” Journal of Health Policy 24, no. 3-4 (2003): 312-323. Link, Bruce, and Jo Phelan. “Social Conditions as Fundamental Causes of Disease.” Journal of Health and Social Behavior 35, extra issue (1995): 80-94. Lobel, Marci, Jada G. Hamilton, Dolores T. Cannella. “Psychosocial Perspectives on Pregnancy: Prenatal Maternal Stress and Coping.” Social and Personality Psychology Compass 2, no. 4 (2008): 1600-1623. Lobel, Marci, and Jennifer Graham. “Translating Psychosocial Research into Culturally Competent Health Care.” Presentation delivered at the Women’s Health Interdisciplinary Conference sponsored by the American Psychological Association, Washington, DC, April 2002. Lu, Michael and Neil Halfon. “Racial and Ethnic Disparities in Birth Outcomes: A Life-Course Perspective.” Maternal Health Journal 7, no. 1 (March 2003): 5-11. Malaspina, Dawn, C .Corcoran, K.R. Kleinhaus, M.C. Perrin, S. Fennig, D. Nahon, Y. Friedlander, S. Harlap. “Acute Maternal Stress Pregnancy and Schizophrenia in Offspring.” BMC Psychiatry 8, no. 71 (August 2008). Marshall, Becker, and Nancy K. Janz. “Practicing Health Promotion: The Doctor's Dilemma,” The University of Michigan, School of Public Health. Annals of Internal Medicine 113, no.6 (September 1990): 419-422. Mathews, T.J., and Marian F. MacDorman, “Infant Mortality Statistics from the 2007 Period Linked Birth/Infant Death Data Set.” National Vital Statistics Report, June 2011. www.cdc.gov/nchs/data/nvsr/nvsr59/nvsr59_06.pdf (accessed July 2012). Mathews, T.J., and Marian F. Mac Dorman, “Infant Mortality Statistics from the 2009 Period Linked Birth/Infant Death Data Set.” National Vital Statistics Report, January 2013.

Bibliography 151 http://www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_08.pdf (accessed February 2013). McEwen, Bruce S. ,and Eliot Stellar. “Stress and the Individual. Mechanisms Ending to Disease.” Arch Intern Medicine 153, no. 18 (Fall 1993): 2093-2101. McEwen, Bruce. “Allostasis and Allostatic Load: Implications for Neuropsychopharmacology.” Neuropsychopharmacology 22, no. 2 (February 2000): 108–124. McLean, Mark, A. Bisits, J. Davies, R. Woods P. Lowry, R. Smith. “A Placental Clock Controlling Length of Human Pregnancy,” Natural Medicine 1, no. 5 (May 1995): 460-463. Misra, Dawn P., Donna M. Strobino, Elaine E. Sashinko, David Nagey, Joy Nandal. “Effects of Physical Activity on Preterm Birth.” American Journal of Epidemiology 147, no. 7 (October 1997): 628-635. Morton, Peggy. Perinatal Loss and the Replacement Child (Dissertation). New York: The City University, 1996. Murphy, Sherry, L., Jiaquan Xu, Kenneth D. Kochawek. “Deaths: Preliminary Data for 2010.” National Vital Statistic Report, January 2012. www.cdc.gov/nchs/data/nvsr/nvsr60/nvsr60_04.pdf (accessed July 2012). Mustillo, Sarah, Nancy Krieger, Erica Gunderson. “Self-Reported Experiences of Racial Discrimination and Black–White Differences in Preterm and LowBirthweight Deliveries.” The CARDIA Study. American Journal of Public Health 94, no. 12 (December 2004): 2125-2131. Neggers, Yasmen and Robert L. Goldenberg. “Effects of Domestic Violence on Preterm Birth and Low Birth Weight.” Acta Obstetricia et Gynecologica Scandinavian 83, no. 5 (2004): 455-460. NPR. “How Racism Impacts Pregnancy Outcomes.” Documentary, 2007. http://www.unnaturalcauses.org/resources_video.php?res_id=70# (assessed February 2009). NPR. “When the Bow Breaks: Racism Harms Your Health.” Documentary, 2008. http://www.youtube.com/watch_popup?v=INc1a6u8yP4 (accessed February 2009). Paradies, Vin. “A Systematic Review of Empirical Research on Self-Reported Racism and Health.” International Journal of Epidemiology 35, no. 3 (April 2006): 888–901. Office of Minority Health. Preconception Peer Education (PPE): Resource Center. http://minorityhealth.hhs.gov/templates/browse.aspx?lvl=3&lvlid=566 (accessed April 2012). Office of the Surgeon General (US), Center for Mental Health Services (US) and National Institute of Mental Health (US). “Culture, Race and Ethnicity: Availability, Accessibility, and Utilization of Mental Health Services.” Substance Abuse and Mental Health Services, 2001. http://www.ncbi.nlm.nih.gov/books/NBK44251/#A1448 (accessed December 2008). Pagninni, Deanna L., and Nancy E. Reichman. “Psychosocial Factors and the Timing of Prenatal Among Women in Jersey’s Health Start Program.” Family Planning Perspectives 32, no. 2 (March/April 2000): 56-64. Peled, Ronit, Devora Carmil, Orly Siboni-Samocha, Ilana Shoham-Vardi. “Breast Cancer, Psychological Distress and Life Events among Young Women.” BMC Cancer 8, no. 1 (September/October 2008): 245-252.

152 Bibliography Pennebaker, James, W. “Perceived Advantages and Disadvantages of Secrets Disclosures.” Personality and Individual Differences 35, no. 3 (2003): 593-682. Peppers, Larry, and Ronald Knapp. Motherhood and Mourning: Perinatal Death. New York: Praeger Publishers, 1980. Price, Sarah Kye. “Women and Reproductive Loss: Client-Worker Dialogues Designed to Break the Silence.” Social Work Journal 54, no. 4 (2008): 367-375. Pozharny, Yevqeniya, Luca Lambertini, Yula Ma, Lauren Ferrara, Christian G. Litton, Adreas Diplas, Adam R. Jacobs, Jia Chen, Joanne L. Stone, James Wetmur, Men-Jen Lee. “Genomic Loss of Imprinting in First-Trimester Human Placenta.” American Journal of Obstetrics and Gynecology 202, no. 4 (April 2010): 391. Quinn, Gwendolyn P., Euna M. August, Deborah Austin, Candace Keefe, Christina Bernadotte, Kenneth Scarborough, Delores Jeffers. “High Risk Community: Men’s Perceptions of Black Infant Mortality: A Qualitative Inquiry.” American Journal of Men’s Health 20, no. 10 (July 2008): 1-13. Reichman, Nancy E., and Julien O. Teitler. “Paternal Age as a Risk Factor for LowBirthweight.” American Journal of Public Health 96, no.5 (May 2006): 862-866. Robbins, John. Reclaiming Our Health. Tiburon, CA: HJ Kramer, 1998. Roberts, Dorothy. “The Paradox of Silence: Some Questions about Silence as Resistance.” Michigan Journal of Law 33, no. 3 (2000): 343-357. Romero, Roberta, Nicolaides and K. Conde-Agudelo A. “Vaginal Progesterone in Women with an Asymptomatic Sonographic Short Cervix in the Midtrimester Decreases Preterm Delivery and Neonatal Morbidity: a Systematic Review and Metaanalysis of Individual Patient Data.” American Journal of Obstetrics and Gynecology, 2012. http://www.ajog.org/article/S0002-9378 (11)02358-1/fulltext (accessed December 2012). Root, Maria P. “Women of Color and Traumatic Stress in Domestic Captivity: Gender and Race as Disempowering Statuses.” In Ethno Cultural Aspects of PostTraumatic Stress Disorder: Issues, Research, and Clinical Applications, edited by A. J. Marsella, M. J. Friedman, E. T. Gerrity, R. M. Scurfield, 363-388. Washington, D.C: American Psychological Association, 1996. Rosenberg, Kenneth D., Rani A. Deseai, and Jianli Kan. “Why do Foreign-Born Blacks have Lower Infant Mortality than Native-Born Blacks New Directions in African American Infant Mortality Research.” Journal National Medical Association 94, no. 9 (September 2002): 770-778. Rowley, Diane L. “Research Issues in the Study of Very Low Birth Weight and Preterm Delivery among African American Women.” Journal of the National Medical Association 86, no. 10 (October 1994):7 61-764. Rowley, Diane L. “Framing the Debate: Can Prenatal Care Help to Reduce the Black-White Disparity in Infant Mortality?” Journal of American Medical Women’s Association 50, no. 5 (September/October 1995): 87-93. Sable, Marjorie, R., and Deborah S. Wilkinson. “The Impact of Perceived Stress, Major Life Events and Pregnancy Attitudes on Low Birth Weight.” Family Planning Perspectives 32, no. 6 (2000): 288-294. SAMHSA “Mental Health, Culture and Ethnicity,” Mental Health Report. 2001. http://www.ncbi.nlm.nih.gov/books/NBK44251/#A1626#A1626 (accessed January 2010). Sapolsky, Robert. Why Zebras Don’t Get Ulcers: An Updated Guide to Stress, Stressrelated Diseases and Coping. New York: W. H. Freeman Company, 1998. Schultz, Amy, Edith Parker, Barbara Israel, Tomiko Fisher. “Social Context, Stressors, and Disparities in Women’s Health.” JAMWA 56, no. 4 (2001): 143-149.

Bibliography 153 Shi, L., B.Starfied, J. Xu, J. Kegan, R. Polizer, J. Macinko. “Primary Care, Infant Mortality and Low Birth Weight in the USA.” Journal of Epidemiology and Community Health 58, no. 5 (2003): 374-380. Shriver, Maria. “A Women’s Nation Changes Everything.” The Shriver Report, 2009. http://www.shriverreport.com/awn/preface.php (accessed Nov. 2009). Smedley, Brian, D., Adrienne Y. Stith, Alan R. Nelson. eds. “The Clinical Encounter,” Institute of Medicine 2003, http://www.nap.edu/openbook.php?record_id =10260&page=160 (accessed June, 2009). Solinger, Rickie. Wake Up Little Susie: Single Pregnant and Race Before Roe vs. Wade, New York: Routledge, 1992. Thompson, Vetta, L. “Perceived Experiences of Racism as Stressful Life Events.” Community Mental Health Journal 32, no. 3 (June 1996): 223-232. Tiwari, A., K.L. Chan, D.Fong, W.C. Leung, D.A. Brownridge, H. Lam, B. Wong, C.M. Lam, F. Chau, A. Chan, K.B. Cheung, P.C. Ho. “The Impact of Psychological Abuse by an Intimate Partner on the Mental Health of Pregnant Women.” International Journal of Obstetrics & Gynecology 115, no. 3 (February 2008): 377384. Travaline, John R., Robert Ruchinskas, Gilbert E. D’Alonzo Jr. “Patient-Physician Communication: Why and How.” Journal of American Osteopathic Association 105, no. 1 (January 2005): 13-18. Troxel, Wendy M., and Karen A. Matthews. “Chronic Stress Burden, Discrimination, and Sub-Clinical Carotid Artery Disease in African- American and Caucasian Women.” Health Psychology 22, no. 3 (2003): 300-309. United States Census. Facts of Blacks in America, 2010. http://www.census.gov/newsroom/releases/archives/facts_for_features_special _editions/cb11ff_01.html (accessed June 2012). Van Ryn, Michelle, and Jane Burke. “The Effect of Patient Race and SocioEconomic Status on Physician’s Perception of Patient.” Social Science and Medicine 50, no. 6 (March 2000): 813-828. Van, Paulina. “Breaking the Silence of African-American Women: Healing after Pregnancy Loss.” Health Care for Women International 22 (December 2001): 229-243. Varner, Michael W., and Sean M. Esplin. “Current Understanding of Genetic Factors in Preterm Birth.” International Journal of Obstetrics and Gynecology 112, Supplement no. 1 (February 2005): 28-31. Wadhwa, Patrick D., Christine Dunkel-Scheiter, Aleksandra Chicz-DeMet, Manuel Portio, Curt A. Sandman. “Prenatal Psychosocial Factors and Neuroendocrine Axis in Human Pregnancy.” Psychosomatic Medicine 58, no. 5 (1996): 432-446. Wadhwa, Patrick, Claudia Buss, Sonja Entringer, James M. Swanson. “Developmental Origins of Health and Disease: Brief History of the Approach and Current Focus on Epigenetic Mechanisms.” Semen Reproductive Medicine 27, no. 5 (September 2009): 358–368. Wegner, Daniel M. White Bears and Other Unwanted Thoughts: Suppression, Obsession, and the Psychology of Mental Control. New York: Guilford Press, 1994 Edition. Williams, David R., and Toni D. Rucker. “Understanding and Addressing Racial Disparities in Health Care.” Health Care Financing Review 21, no. 4 (Summer 2000): 75-90. Williams, M., Davis, T. “The Role of Health Literacy in Patient-Physician Communication.” Family Medicine 34, no. 5 (2002): 383-389.

154 Bibliography Williams, Terrie M. Black Pain. New York: Simon & Schuster Publication, 2008. Zaslavsky, Alan M., and John Z. Ayanian. “Integrating Research on Racial and Ethnic Disparities in Health Care over Place and Time.” Medical Care 43, no. 4 (April 2005): 303-307.

155

Index adverse birth outcomes, 3, 56, 75-76, 78-79, 134 Affordable Health Care Act, 135 African-American women, 2, 26, 4546, 49, 53, 99 Alana, 12 allostasis, 46, 87 April, 7

emotional support, 19-20, 58, 73, 77, 104, 107 ending stories, 90-98 England and Wales, 2. See also foreign born Epigenetics, 47, 119 Esplin, Sean, 110 excessive exercise, 82, 86, 134

Bacterial Vaginosis, 26, 120 Barnes, Glenda, 53 BIM rates, 3, 123 Black Infant Mortality (BIM), 2-5, 24, 27, 31, 40-41, 44, 47, 53, 56, 69, 107, 113, 116, 118, 121, 123, 125-126, 136 biographical data, 7, 10-12, 15, 16, 141 blame, 84 broad-based intervention, 53 business as usual, 48-49, 114, 131

factors, 3, 8, 28, 30-31, 45, 53, 65, 69, 76, 104-105, 108, 120, 124, 133 familial history, 7, 40, 75-76, 78-79, 110, 111 Family Violence Prevention Fund, 16 fathers, 63, 67-69, 78; father’s role, 78-79. See also paternal family history; women’s perception, 6973 financial options, 59, 115, 128. See also socioeconomic factors findings, 4, 8, 10, 13, 15, 17, 19, 21, 24, 26, 30, 32, 35, 40, 41, 50, 53, 55, 56, 58-60, 64-65, 76, 77, 82, 99, 102-104 foreign-born black women, 2, 113 Freddie, 14

Carla, 43-44 communication/physician, 30, 31, 35, 38, 41, 112, 115 Cooper, Lisa and Debra Roter, 27 coping styles, 26, 44-45 48, 54-55, 63, 64, 99-103, 114, 129-130. See also stress Cortisol, 47. See also stress responses Crosby, Faye, 34 culture, 78, 113 David, Richard, 1, 2, 138 Davis, James and Tom Smith, 60 depression, 15, 105, 135 developmental origins of health, 119 disempowerment 103, 104, 117 disparate care, 31 doctor selection, 26-27, 29, 30, 32, 109, 131-132 domestic violence, 36. See also spousal abuse Dorothy, 11, 14 education, 125-126, 134

gender, 29, 45, 109 grief, 99, 104, 135 Harrell, Shelly, 129 healing strategies, 99-102, 105, 117 history, culture, and race, 2, 4, 49, 65-68, 120,124 Hospitalizations, 33, 34, 40, 82, 86, 104 imbalance, 20, 41, 105 IM/disparity, 3, 4, 112, 119, 121, 126, 137 infant mortality, (IM), 3, 19, 26, 31, 53, 56, 68, 79, 123 Institute of Medicine Report, 52 Internal alarm mechanism, 39, 113, 132

156 Index key events, 8, 17-19, 20, 105, 107, 109 Krieger, Nancy, 49 life changes related to subsequent pregnancy, 70, 99, 102, 104, 134, 135-137 life course: maternal health, 121, 125, 126-127, 131 Linda, 11, 18 Link, Bruce and Joe Phelan, 53 low birth weight (LBW), 3, 19, 36, 41, 49, 79, 99, 112 Lu, Michael, 45,125 Makena, 111-112, 134 March of Dimes, 112 Marshall, Becker and Nancy Janz, 35 maternal health, 20, 21, 44, 48, 63, 115, 118, 120-121, 125-126, 130131 maternal stress, 43-45, 64 mechanisms for increased risk, 120 mediators, 120, 130 medical diagnosis, 41, 104 medical explanations, 103, 105, 117 mental health, 135 methodology, 3 mid-wife, 29, 97 Misra, Dawn, 82 morning sickness, 36 Mustillio, Sarah, et al., 49 National Academy of Sciences, 105, 112 OB/GYN, 4, 24, 28, 32, 125, 136 Obstetrics, 112, 124, 138 Office of Minority Health, 68, 126 paradigms, 3, 118, 123 paternal family history, 75, 67, 110. See also familial history Peer Education Program, 125 personal decision, 7, 9, 10, 12-13, 20, 108, 127 PEW Research Center, 115

physician/patient relationship, 25, 2728, 31-35, 39-40, 41, 110, 113, 131-133, 136 physician selection, 26-29 poor birth outcomes, 2, 14, 16, 18, 26, 44, 47, 75-76, 99, 108, 110111, 113, 133 post infant loss, 90, 99 precipitating events, 81-82, 86-87, 116 preeclampsia, 110 preexisting conditions, 104 pregnancy planning, 8-10, 13-16, 20, 116, 126-128: unplanned unwanted, 15, 21n3; unplanned wanted, 16 premature births, 40, 76-77, 104, 111-112 prenatal care, 25-26, 35, 40. See also physician selection protective factors, 19, 68, 134-135 psychosocial issues, 3, 36, 44, 116, 119-121 Qualitative study, 3, 123 Quinn, Gwendolyn, 68 race, 25-27, 29-30, 41, 105, 109,113. See also role of race race concordant physician, 27 race and culture, 48, 113 race and gender, 45, 109 racial history, 2, 48, 50, 109 120, 129 racism, 27, 34, 45. See also role of race reflections on day of the event, 90-99 research question/primary, 3; related research questions: early stages, 8; medical, 24; precipitating causes, 82; reflections on loss (event), 103-104; stress, 44 research study (BIM), 3 risk behaviors, 25 risk identification, 35, 87, 105, 111, 112, 117, 133 Roberts, Dorothy, 34 role of race, 25, 28, 41, 53, 110, 120121 Root, Maria, 45 Ross, Michael, 111, 120

Index 157 secrets, 49, 50, 60-61, 63, 85, 115 self-expectation, 48-52 short cervix, 86, 111, 112, 117 social support, 8, 19-20, 68, 77-78 socioeconomic factors, 2, 31, 53, 68, 113, 118, 128. See also financial options specialty testing, 36, 37, 41, 58, 105, 117, 131 spiritual beliefs, 103 spousal abuse, 12, 16 15, 30, 36, 63, 74, 77, 112, 132, 134 spouse, 63, 67, 134. See also fathers statistics, 3, 67, 123, stress, 44; history, culture, and race, 48-52; perception of stress, 53; recognizing stress, 53-54, 103, 129; sources of stress, 56-63

subsequent births/pregnancies, 99, 104, 118 symptoms, 30, 32, 35, 38, 40, 57, 74, 111, 133. See also warning signs systems perspective, 107 Tina, 15 transgenerational transmission, 50, 129 Van Ryn, Michelle and Jane Burke, 30 Varner, Michael, 76 warning signs, 35-40, 47, 57, 63, 81, 1 05, 111, 113, 114, 115 weathering, 46, 113 Wileta, 16 Yvonne, 10, 13

159

AUTHOR’S PAGE Dr. Lisa Paisley-Cleveland has significant experience in the fields of mental health, public health, and children’s services. As a trained mental health professional with expertise in reducing education and health care disparities, she has held leadership positions for several organizations serving the range of needs for both children and families. Dr. Paisley-Cleveland is an Adjunct Professor at Hunter College Department of Sociology in New York City, and is the Founder and COO of Sharpervision Consulting (SVC), best known for its work in program development, strategic planning, training, and professional development for both non-profit and for-profit organizations in the greater New York/New Jersey areas. Dr. Paisley-Cleveland received her PhD from The Graduate School and University Center, City University of New York, in Social Welfare. She earned her BA from Howard University and her Masters in Social Work from the New York University Silver School of Social Work.