Perinatal Bereavement Rituals and Practices Among U. S. Cultural Groups 3031472020, 9783031472022

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Perinatal Bereavement Rituals and Practices Among U. S. Cultural Groups Erin M. Denney-Koelsch Editor

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Perinatal Bereavement Rituals and Practices Among U. S. Cultural Groups

Erin M. Denney-Koelsch Editor

Perinatal Bereavement Rituals and Practices Among U. S. Cultural Groups

Editor Erin M. Denney-Koelsch Palliative Care University of Rochester Rochester, NY, USA

ISBN 978-3-031-47202-2    ISBN 978-3-031-47203-9 (eBook) https://doi.org/10.1007/978-3-031-47203-9 © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland Paper in this product is recyclable.

Foreword

The book opens with these words: “Perinatal loss is a ubiquitous experience across human existence” (see Denney-Koelsch, introduction). Ubiquitous, meaning present or found everywhere, perfectly describes why this book was written. As a one-­ of-­a-kind reference, the book’s authors take us on a journey that explores meaning, which is woven into the human experience of loss. If one uses the metaphor of a quilt, the chapters are like quilt pieces intended to be sewn together into one. Each chapter could stand on its own like a quilt square, yet the real beauty engages us as we see the whole. The quilt’s background is often where the most perfect patterns come alive, uniting the individual stories of each square, much like this book does. Books come in many shapes, sizes, and lengths. There are books that stand out solely on their exemplary content. This is one of those. Dr. Denney-Koelsch and the author experts produced a publication that will be a contribution to the healthcare field for years to come. I have learned that one can often judge a book by its first (in this case, second) and final chapters. In Chap. 2—Foundations and Meanings of Death Rituals—the authors describe van Gennep’s stages that provide the reader a deep understanding of the developing concept of ritual. These include separation (e.g., a baby’s death), the waiting period (liminality, the space between; perhaps the time between death and some type of ceremony), and a final transformation (e.g., a ritual designed to represent change or something new). I found this chapter to be a thorough grounding in the art and practice of ritual. In the last Chap. 13, titled How to Plan and Support Families Through Rituals and Memory-Making, the authors discuss multiple options for memory-making, the how tos (e.g., photography), and sensitivity in connecting with parents regarding their preferences. Dr. Denney-Koelsch’s vision to create a new and different look at ritual began as an ethnographic research project and led her to people and materials that inform the smallest details of the writing. She took an overarching view of history, religion, and death rituals for everyone, not just babies. In these times when healthcare equity and inclusion have rightfully taken center stage, the editor and authors have written a key resource for anyone associated with bereavement and end-of-life care across cultures. The editor and contributing authors have created a masterpiece that focuses on understanding why different cultural groups and religions respond to perinatal v

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loss the way they do. She explores when life begins, when someone becomes a person with a soul or spirit, and what happens after we die, done across cultural and religious groups. This book is descriptive, not prescriptive. In a contemporary communication strategy of bullet points, Perinatal Bereavement Rituals and Practices Across U.S.  Cultural Groups is the opposite. Rich description, a facet of ethnographic research, provides the reader with cultural background, filling in numerous details that would be left out of a less-nuanced presentation. Why is this significant? To care for those whose lives have been different from our own, we are obligated to do our best to engage and be with those we care for. When the authors explore, for example, the question of when life begins across religions and cultures, not surprisingly, there are numerous answers to that question. That leads the reader to a focus on social construction, essentially that meanings grow out of a context. Knowing the context helps us know the individual. As noted throughout the book, rituals are imbued with meaning, used to ease transitions and mark milestones. In Chap. 4, the Jewish Halakha may be used as a guide for ritual for a baby, yet the individual nature of grief leads to this mother’s quotation in Liam’s story: I knew right away that even if it was against traditional Jewish values, it was imperative to me that we give him a name and honor the hope that he had brought to our lives. We decided to name our son "Menachem-Mendel," after my husband's brother who had only lived for two weeks. Just being able to give our son a name provided great comfort for us at the most difficult time in our life.

Each of these stories of diverse beliefs, values, and practices has commonalities. Getting through the night, living another day, accepting help from others, living with the pain of unintended hurt caused by the voice of another, choosing to do something in honor and memory. In all of these experiences that happen when a baby dies or a pregnancy ends, one can hear the meaning of relationship, central to human grief, intricately woven into childbearing loss. And with that grief often comes the desire to remember. In conclusion, this book has a broad audience, especially those involved in healthcare teams and community support networks. The desire to develop and sustain an exemplary practice is in all of us. It seems appropriate to close this foreword to such a stellar book with a reminder about what constitutes stellar practice. From DJ’s mother (Chap. 5): I did have a nurse that I thought was phenomenal. I think she was a God-send for me in that moment. And I just wish that everybody could have an experience like that because everything is so finite. You only get to do it once. Each moment matters.

This book can help you as a clinician and human to be there in that finite moment of the family’s one chance. Resolve Through Sharing® Gundersen Medical Foundation La Crosse, WI, USA

Rana Limbo

Preface

This book has been a true labor of love and a spiritual journey. It represents my work of a number of years searching to understand the ways we humans cope with death. It began as a 6-month sabbatical project in 2021–2022. In my work as a palliative care physician for people from pregnancy to geriatrics, I have walked alongside many patients and their families who are facing death and loss of a loved one. During my palliative care fellowship, my career took me to the niche of perinatal palliative care, caring for families who in the past have not received the attention they deserve. Usually, they have very suddenly received a lethal fetal diagnosis for their unborn baby, who is faced with a serious fetal condition that may result in prolonged complex medical needs or death. I see the love these parents have for their babies, and their dreams of the future are dramatically altered by this news. When parents are faced with serious fetal conditions, they must make heart wrenching decisions in the midst of grief and the loss of their future dreams. They need expert support to address suffering, hopes, and fears. Working with families when birth and death collide inevitably elicits questions about what is life and what happens after death. One of my colleagues describes the moments between birth and death as the time “where heaven and earth touch.” It is truly sacred work. A few years ago, one of my dear friends from my college years delivered an unexpected full-term stillborn, named Lysander. As Eva and her husband processed this loss, I wondered in what ways her religious background as a Mormon (married to a non-Mormon) influenced their decisions about death rituals as they coped with Lysander’s death. She shared that in the Mormon church, babies are considered inherently innocent. She chose a hospital cremation so Lysander could “be with the other little babies.” His only photographs were taken several days after death, and

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Eva regretted not having photos taken right after Lysander was born, so she could remember him as she wanted. About 6 months later, she took the photographs to the beach on a cold winter night, built a bonfire on the beach, and burned the photographs along with white roses. She describes, I felt like that was a good ritual and helped process my grief a little bit. I was really grateful to…invent something because I didn’t feel like that I had done enough. There’s a lot of comfort in a ritual. I just didn’t feel any closure for a while but that really helped… I think it was a combination of different past rituals…a lot of cultures have burning things and having the solitude of the stars and a clear night and have it be an unusual outside of time experience... The white flowers do symbolize a feeling of innocence and purity because since he died before he could even experience the world, it makes it doubly innocent…I felt after that, not that I hadn’t appreciated it before, but the world is such a beautiful and sad place that he never got to see. I feel like I have to experience it all the more fully. It crystallized my appreciation of the beauty that we have.

–Eva, Lysander’s mother As I was writing this book, Eva and Lysander’s story resonated with me. It illustrates how many families create their own rituals. Eva, like many of the parents you will hear, invented her own ritual by doing what gave her the most meaning at the time. Through this ethnographic study, I sought to understand the role of culture in how people use rituals after death or perinatal loss. Knowing that pregnancy and infant loss lie on a spectrum of experience, I sought in this work to understand how parents experience any type of perinatal loss—miscarriage, stillbirth, or infant death—and how their understanding and feelings were influenced by their culture and/or religion. Studying how an individual responds to a personal crisis is inherently deeply complex. They describe contributions from their cultural stories, history, family, individual personalities, religion and spiritual beliefs, ways of thinking, and lived experiences. Focusing on the question of cultural influences on perinatal loss has allowed me to meet and hear the stories of women from many backgrounds, cultures, religions, and then go back to the literature, seeking context, history, and other stories to corroborate or dispute what I thought I learned. The journey has been profound. In exploring other’s cultures, I think it’s important to address my own. I come from a culture of European ancestors who emigrated to the U.S. at least 200 years ago. They were a mix of farmers, ministers, teachers, and highly educated academics. Several of my great and great-great grandparents were Protestant ministers and missionaries, with more recent generations, including myself, veering into Unitarian Universalism (UU). I usually worship through nature, music, and time with family. While I worked extremely hard to get where I am, I had innumerable opportunities put in front of me by parents who always prioritized education and have supported me in a thousand ways. I have always recognized and been grateful for this life of privilege. My pregnancy journey has also been privileged. Thanks to birth control, good medical care, and a lot of luck, I have had two planned pregnancies and two healthy children. While my daughter came 6 weeks early and was in the NICU, and my son

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threatened to do the same, they are both healthy and thriving. These experiences were difficult at the time, but I have never experienced the terrible grief and loss that the women in this book have lived through. I do, however, understand the almost painful intensity of love a mother feels for her child, even a dreamed of flicker of a child. I can certainly imagine the exquisite pain of extended infertility, sudden and traumatic loss of a desired pregnancy or baby, and the daunting challenges of welcoming a baby who if they survive, will be seriously ill. To acknowledge our privilege, it has been my family’s goal to educate ourselves about history, to understand others’ life stories, and to put ourselves in the shoes of others. So, part of the drive for this research was my own personal cultural and religious exploration. I have grieved and struggled with my country’s challenging history as I toured a Jewish funeral home, experienced the shock of an Amish cemetery containing more than 50% baby’s graves, explored the American Museum of African American History, attended a Black funeral for the first time, and read more about the atrocities of early colonists toward Native Americans. In my work as a physician, I have cared for families from all of the cultures represented in this book, walked with them on their medical journeys and even up until death. One of the essential components of palliative care assessment is learning the person’s life story, where they come from, who their psychosocial and spiritual supports are, and understanding their values and beliefs. We typically ask about religion and spiritual beliefs, but often don’t know how to respond to these responses other than to call the chaplain for assistance. Also, my experience with families usually does not extend beyond the first hours or days after death. I am usually not present for the bereavement of the families of my patients. After they leave the hospital, what happens? What is the funeral like? What is their mourning process? How do these rituals help them in their grief? What are the small, seemingly minor moments or tasks that hold great meaning because of their loss? So, in this exploration of culture, I also wanted to understand and help others understand a number of spectrums: the spectrum of pregnancy and infant loss, the spectrum of cultural and religious rituals and practices, and the arc of each family’s story of loss. Part I of the book introduces perinatal loss, the theoretical background for understanding pregnancy and infant loss, perinatal bereavement, and role of rituals in death and dying. This part defines different types of perinatal loss, including a section on those who have chosen termination of pregnancy for life-limiting fetal conditions. Their stories have many similarities to other losses in this book, with parents feeling shock, grief, and making incredibly hard decisions out of love. Part I also addresses perspectives on fetal personhood, which intimately influence how cultures approach rituals surrounding pregnancy and infant loss. Part II covers the Major U.S. Ethnic and Religious groups, categorized by Racial and Ethnic groups identified by the U.S. Census. The world’s major religions (and some minor ones) are discussed within these Census groups, even though there is sometimes overlap between them. In this part, individual family stories provide the voices of parents themselves, sharing how they personally coped with their loss and how their culture helped (or did not help) them in their bereavement. Death rituals

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of older persons (child and adult) are also discussed, as it is impossible to discuss what is unique about pregnancy or infant death rituals without knowing the rituals of an older person’s death. The final chapter in this part is on Special Populations who span the other racial and religious groups, but whose bereavement experiences are unique. Infertility is a common story for many of our loss parents. Those who have never conceived experience grief in the form of their lost future as parents. The LGBTQ+ community also has unique fertility and reproductive needs, often requiring reproductive assistance, and therefore their losses are felt very keenly. Part III covers the healthcare team and supportive services in the community. We overview the interdisciplinary healthcare team, and community supports such as funeral homes, cemeteries, and support groups. The final chapter is a practical “How to” guide for supporting families through memory making and co-creation of rituals of all kinds, from hospital to home to community memorial events. This final part was a group effort; many authors contributed sections on their expertise and from their discipline’s perspective. The book attempts to cover the most critical concepts that should inform caregivers about common cultural and religious beliefs and practices, using real people’s stories. When we discuss how a baby’s short life is honored through ritual in a particular culture, it inevitably leads to questions of when does life begin? When does a person become a person? When does the soul or spirit enter the body? What happens after we die? These fundamental spiritual questions of life and death have been asked since the beginning of humankind. The widely varied perspectives on these questions among the cultural groups described here demonstrate the wealth of ideas on this topic, as well as the lack of any consensus. The stories in this book include the voices of many parents whose personal needs in bereavement were not sufficiently addressed by their own cultural or religious group. They sought support elsewhere, often finding other bereaved parents to share ideas on how to honor their baby’s life. Whatever their cultural or religious background, each parents’ unique needs and wishes must be addressed by listening, caring, being open-minded, nonjudgmental, and sensitive. Ultimately, the parents know best what will help them, and we are all here to support them in making the most of their baby’s short life. Rochester, NY, USA

Erin M. Denney-Koelsch

Acknowledgments

First and foremost, I must thank my husband, Matthew Koelsch. He holds everything together at home while I work (a lot), teach, do research, and do crazy things like taking spiritual journeys and writing books. He is the most extraordinary caregiver for our 2 kids, 2 dogs, and 22 chickens on our small homestead in Western New York. Our kids (Cora, 13 and Evan, 10) don’t find it odd at all to discuss death rituals at the dinner table. You guys are my everything and I couldn’t do it without you! I deeply thank two of my research colleagues and dear friends. Dr. Denise CôtéArsenault served as my mentor in ethnographic methods and analysis. She is also coauthor on several chapters as an expert in pregnancy loss, nursing, and Catholicism. And I thank Dr. Katie Kobler, who has such a great mind for making complex concepts seem obvious and has such a beautiful way with words. Her expertise on perinatal loss rituals and interdisciplinary teamwork was invaluable. I want to thank all of my coauthors. Many have had personal losses as well as professional expertise. Your stories and your knowledge of working with families and culture and religious perspectives, beliefs, and practices have brought this entire book to fruition. I also deeply thank Dr. Constance Baldwin (Professor of Pediatrics, my personal scientific editor, and also my mother) who has helped edit most of the book using her masterful wordsmithing and organizational expertise. And to my father Dr. Richard Denney and stepmother Karen Denney, who have been staunch supporters of my career and work from my childhood on. Your pride in me always brings me such joy. To Eva, for your bravery, beauty, and courage and to baby Lysander’s memory. To all the mothers, fathers, grandparents, siblings, friends, and families who have grieved and found solace in all the churches, synagogues, temples, mosques, longhouses, gardens, and beaches described in this book: Your beautiful, heartbreaking, poignant, and sweet stories have made this book come alive.

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Contents

Part I Overview of Perinatal Death Rituals 1

 Spectrum of Loss: Introduction to Perinatal Loss and A Bereavement ��������������������������������������������������������������������������������������������    3 Erin M. Denney-Koelsch and Ponnila Marinescu

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 Foundations and Meaning of Death Rituals������������������������������������������   29 Erin M. Denney-Koelsch, Kathie Kobler, and Denise Côté-Arsenault

Part II Common Death Rituals and Practices in Major U.S. Cultures After Perinatal Loss 3

 European Americans and Perinatal Death Rituals������������������������������   49 Erin M. Denney-Koelsch, Denise Côté-Arsenault, and Keturah Beiler

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American Jewish Beliefs and Practices Surrounding Pregnancy Loss and Infant Death ����������������������������������������������������������������������������   87 Rabbi Shalom Schlagman

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 African American Culture and Perinatal Loss��������������������������������������  113 Darryl Owens and Erin M. Denney-Koelsch

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 Rituals and Beliefs about Perinatal Loss in Latinos Living in the USA������������������������������������������������������������������������������������������������������������  133 Anna L. Calix and Erin M. Denney-Koelsch

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 Native American Perinatal Bereavement Rituals and Beliefs��������������  173 Erin M. Denney-Koelsch

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 Asian American Perinatal Bereavement Rituals ����������������������������������  193 Bryan Jan and Nirupama Laroia

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 Muslim American Perinatal Bereavement Rituals��������������������������������  225 Erin M. Denney-Koelsch xiii

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10 Unique  Experiences of Family Building and Perinatal Loss Using Assisted Reproductive Technologies with Heterosexual and LGBTQ+ People��������������������������������������������������������������������������������������  245 Lindsay J. Sycz, Adam T. Evans, and Erin M. Denney-Koelsch Part III Planning and Supporting Families Through Perinatal Death Rituals 11 The  Interdisciplinary Health Care Team in the Setting of Pregnancy Loss and Infant Death����������������������������������������������������������  273 Erin M. Denney-Koelsch, Chris Tryon, Darryl Owens, Elise Marcello, Elaine Kong, Katherine Hyde-Hensley, Elizabeth Conrow, Kathie Kobler, and Melanie Chichester 12 Community  Supports for Parents with Perinatal Loss and Bereavement ��������������������������������������������������������������������������������������������  291 Erin M. Denney-Koelsch, Alyssa Gupton, Amy Degro, Nora Doebrich, Katherine Hyde-Hensley, Melanie Chichester, Jennifer Sternal-Johnson, Amy Kuebelbeck, Debra Cochran, and Denise Côté -Arsenault 13 How  to Support Families through Rituals and Memory-Making ������  321 Erin M. Denney-Koelsch, Kathie Kobler, Melanie Chichester, Katherine Hyde-Hensley, Chris Tryon, Jennifer Sternal-Johnson, Denise Côté-­Arsenault, Debra Cochran, Amy Kuebelbeck, Rachel Diamond, Barbra Murante, and Elise Marcello Index������������������������������������������������������������������������������������������������������������������  371

Part I

Overview of Perinatal Death Rituals

Chapter 1

A Spectrum of Loss: Introduction to Perinatal Loss and Bereavement Erin M. Denney-Koelsch and Ponnila Marinescu

A flower and not a flower; Of mist yet not of mist; At midnight she was there; She went as daylight shone. She came, and for a little while Was like a dream of spring. And then, As morning clouds that vanish traceless, She was gone. —Po Chu From Mothers of Thyme: Customs and Rituals of Infertility and Miscarriage by Janet L. Sha

Author’s Note: Dr. Denney-Koelsch is a palliative care physician who specializes in perinatal palliative care and is the primary researcher for the entire book. When the text describes methods using the first person, it is her voice. Dr. Marinescu is a maternal-fetal medicine physician who specializes in perinatal loss and terminations for life-limiting fetal conditions.

E. M. Denney-Koelsch (*) Division of Palliative Care, University of Rochester, Rochester, NY, USA e-mail: [email protected] P. Marinescu Division of Maternal-Fetal Medicine, University of Rochester Medical Center, Rochester, NY, USA e-mail: [email protected]

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 E. M. Denney-Koelsch (ed.), Perinatal Bereavement Rituals and Practices Among U. S. Cultural Groups, https://doi.org/10.1007/978-3-031-47203-9_1

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Introduction to Perinatal Loss Perinatal loss is ubiquitous across human existence. Pregnancy and infant loss, a term interchangeable with perinatal loss, refers to miscarriage, stillbirth, and death of liveborn infants in the first year of life. This book arose out of an ethnographic research study that sought to explore the cultural and religious aspects of perinatal loss in the many and varied groups within the USA. Many people are affected by pregnancy and infant loss: not only the parents and family members, but also all those who support parents in their grief from the medical professionals to community support services. Society’s failure to acknowledge the profound experience of perinatal loss has meant that parents often have to invent their own rituals and search out their own supports to overcome their grief. These approaches are highly influenced by parents’ personal views and needs; their social context, religious beliefs, family culture and beliefs, and surrounding support network; and the views of society at large. When a family’s own cultural or religious community fails to provide adequate support, meaning or structure after a perinatal loss, they must seek out their own “loss community” to receive needed support and understanding, often through support groups or social media. Ultimately, many of the parents interviewed for this book had to find their own rituals and mourning practices to meet their own needs. The intended audience for this book is broad: anyone who is experiencing, has experienced or is working with someone who has experienced a perinatal loss. The authors come from a wide-ranging group of interdisciplinary clinicians (nurses, physicians, social workers, child-life specialists, and doulas); therapists in bereavement, music and art; and clergy and chaplains. It is designed to be a reference for any of these care providers, or others who interface with parents who are undergoing the trauma of losing a fetus or infant, whether in the hospital or in the community. This project initially arose when one author (EDK) was writing and editing an earlier book called Perinatal Palliative Care: A Clinical Guide (Denney-Koelsch and Côté-Arsenault 2020). When I asked a chaplain for resources on how different religions approach pregnancy and infant loss and what rituals they might use, he replied that he did not think such a resource existed. He came up with a brief description of some common birth and death rituals, but I realized that this was only a beginning. This book represents the first comprehensive resource on U.S. cultural and religious beliefs, perspectives, practices and rituals related to perinatal loss. Because the USA is a proverbial melting pot of cultures, the book covers a wide range of racial, ethnic and religious groups from across the world. We interpret these traditions within the context of U.S. society and healthcare system. In order to understand rituals and practices around the death of a fetus or infant, one must understand human beliefs about the soul or spirit and the afterlife, and cultural practices for the deaths of adults and older children. We have, therefore, taken a broad cultural view of pregnancy and infant loss in this book. We cover a brief history of each cultural group and religion, common death practices for adults, and the unique practices that apply to fetuses and infants. There cannot be a discussion of culture without stories, and the richest part of the book are the words of

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parents themselves. No single story can represent all people, but the richness of the parents’ own experiences can help us to ground theoretical and theological concepts in real, gritty life. Fundamental questions of life, death, and the search for meaning in death are the essence of this work.

Ethnographic Methodology Ethnography, which is often conducted by anthropologists or social scientists, entails describing a culture by understanding life from the native point of view (Spradley 1980). An important component of ethnography is understanding the meaning of specific actions and events, such as the death of a baby. People may express this meaning through words and actions. Spradley writes that: … in every society, people make constant use of these complex meaning systems to organize their behavior, to understand themselves and others, and to make sense out of the world in which they live. These systems of meaning constitute their culture; ethnography always implies a theory of culture. (Spradley 1980, p. 5)

Culture is described by Spradley as “acquired knowledge” that is learned by humans from their surrounding influences. These influences can include their immediate and distant family, the neighborhood, city or country in which they currently live or where they were raised, their religious teachings or beliefs, and more. Part of culture is that “human beings act toward things on the basis of the meanings that the things have for them” (Spradley 1980, p. 8), and those meanings are influenced by their culture. For example, the way in which a parent defines the meaning of a pregnancy at any particular gestational age, or identifies a newborn baby in the context of their own family, has enormous implications for how they will respond if that fetus or baby dies. To understand culture, we must seek to understand cultural behavior (actions prior to, during and after the death of a baby), cultural knowledge (their understanding of religious beliefs or practices in their group(s)), and cultural artifacts (keepsakes, gravestones, urns, etc.). From the observation of these behaviors, artifacts, and speech messages, the ethnographer can come to understand the informant’s cultural knowledge. This ethnographic study is unusual because I wanted to understand not just one culture, but the phenomenon of death rituals seen through the lens of the very specific circumstance of perinatal loss. I first defined the cultural and religious groups I  should explore, and for this purpose we used the major demographic groups defined by the U.S. Census and the World’s Major Religions (Christianity, Judaism, Islam, Hinduism, and Buddhism). It was important to include cultures and racial/ ethnic groups that are unique to the USA, in particular Native Americans and smaller religious groups such as the Amish and Mennonites, Church of Jesus Christ of Latter Day Saints (Mormons), Jehovah’s Witnesses, and others. It is important for health care workers and community support caregivers to understand the cultural context and beliefs of the wide variety of patients they see. The Institutional Review Board at the author’s institution reviewed the study and approved it as having minimal risk. An information sheet for participants stated the

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purpose of the study, that participation was voluntary, and that interviews would be audio-video recorded for research purposes. It stated that the results were going into a book for health care providers who care for families after perinatal loss. It was also expected to contribute to health care education and potential future publications. When personal stories were shared, we asked each informant to state whether they would prefer that we use real or simulated names for them and their baby in the book. Virtually all gave permission for use of real names, wanting their story and their baby’s life to be shared. This work was supported by the University of Rochester Academic Leave Program, which allowed the author 6 months of protected time to conduct research, assemble a qualified set of chapter authors and contributors, and write and edit the book. Funding for professional transcriptions came from the University of Rochester Center for Palliative Care Research. Denise Côté-Arsenault served as primary mentor for this project, providing extensive guidance on ethnographic methodology, design, and data analysis. Kathie Kobler has also provided substantial advice, mentorship, and conceptual guidance throughout. Because this ethnography covers many cultures, not an immersion within a single culture, trustworthiness and validity of the findings were increased by using extensive interviews with key informants who identified with the cultural and religious groups listed above. By purposive sampling from across U.S. cultures, I first found key informants to be interviewed from the many cultural groups, identified through their unique personal and professional expertise. I interviewed 46 individuals or groups. Because of their unique expertise, many of the co-authors for the book were identified through these interviews. Each persons’ stories and perspectives were compared with existing literature to make sense of their perspectives. To add credibility, An Author’s Note is added at the beginning of each chapter explaining their own background (cultural and religious), and their personal or professional experience with perinatal loss and bereavement. Denise Côté-Arsenault and Kathie Kobler both provided additional mentorship in interpretation of the data. Each story shared is its own unique experience but the commonalities and differences are highlighted to increase transferability of the findings. In preparation for this project, an extensive literature search identified books, manuscripts from medical and sociological journals, bereavement and perinatal loss websites, and support groups. Search terms included death rituals, perinatal loss, pregnancy loss, infant loss, infant mortality, mourning practices, and specific cultural terms like African American, Jewish, etc. While a substantial literature on death rituals was identified, most sources failed to mention infant death and even fewer mentioned fetal death. There was no source that resembled this book, with the exception of one ethnography, the Mothers of Thyme: Customs and Rituals of Infertility and Miscarriage by Janet L. Sha from 1990. This exceptional text does not cover stillbirth or infant loss, but it is rich with global stories that I have referenced often in the book, including the wonderful poem at the start of this chapter. Data collection was conducted using multiple methods. The individual interviews were our primary and initial focus, but we also collected and documented artifacts that could be included in the book to deepen our understanding of cultures, rituals, and religious beliefs. These include texts, testimonials, and photographs of

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parents with their dying or deceased babies, as well as photographs of memorial artifacts: cemeteries, head stones, unique family-chosen memorials, memory box items, and infant footprints and handprints. Ethnographic interviews, using the methods of Spradley (1979), were guided by three elements: (1) the explicit ethnographic purpose of the interview (to understand cultural and religious beliefs, practices and rituals after perinatal loss), (2) the ethnographic explanations (such as “I’m interested in your role as a clergy in pregnant loss. What would you say to a parishioner who comes to you after a loss”), and (3) ethnographic questions (e.g. “When they told you there wasn’t a heartbeat, what did you do first...second...”). I also asked contrast questions, such as “How would this be different if it were an older child or an adult?” Interview informants came from three major groups: 1. Bereaved parents from all the major demographic and religious groups in the USA with a goal of at least 2 from each group 2. Hospital-based interdisciplinary team members (physicians, nurses, social work, child-life specialists, music therapists, chaplains, bereavement specialists, hospital funeral director) 3. Community support service members (e.g., clergy, funeral directors and employees, cemetery directors, support groups) Network sampling methods were used so that initial participant contacts suggested others who might be informative. In total, 47 interviews were done: 7 interdisciplinary health care team members, 7 clergy or chaplains, a Jewish funeral director, a cemetery director, 27 bereaved parents (some of whom overlapped with the previous groups). I observed 2 support groups and interviewed the leaders of 4 others. The interviews were all conducted on Zoom (due COVID-19 pandemic requirements and geographic distance); they were recorded and professionally transcribed. While this approach did not allow the researcher to be “in the field” and study the living context of informants as much as she would have liked, she found that Zoom worked well and was convenient for the informants. The vast majority of the interviews were done by the author/editor (EDK), but some chapter authors also wanted to enhance their understanding of the topic by doing some independent interviews, particularly in the Jewish, Asian, and Latino chapters. These interviews did not necessarily follow the same interview guide as those done by EDK, but their stories and experiences are rich with information. Detailed field notes were written. I often typed throughout the Zoom visits, or jotted hand-written notes when in the field, typing up notes and impressions immediately afterwards. A running spreadsheet of contacts recorded their cultural identification, religious background, and occupation or professional discipline. A spreadsheet of memos allowed tracking of commonly repeated themes and concepts, ideas for further exploration, and suggested new informants or resources. Reflective and analytical memos were kept, including cultural symbols (such as “fetal soul” and “the afterlife”) and the relationships between those symbols. A comparative grid of religious perspectives was created that included the five World religions and the Native American Haudenosaunee Nation, recording information

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on the afterlife, the timing of fetal personhood, and basic death rituals. A discussion of these data can be found in the Introduction to Part II. Beginning close to home in Western New York, I first interviewed all members of my own institution’s interdisciplinary health care team in palliative care, obstetrics, maternal-fetal medicine, and neonatology. These were doctors, perinatal loss bereavement nurses, bedside nurses, child-life specialists, chaplains, bereavement educators, and music therapists. Each was asked for suggestions on resources they would recommend or others whom we should interview (using network sampling method). Next, additional informants were recruited through several national listservs of perinatal loss and perinatal hospice groups. We sought health care team members, community support, and bereaved parents from different cultural and religious backgrounds with the goal of learning from people  with as many diverse perspectives as possible. To enhance my historical understanding, I took a tour of the American Museum of African American History and Culture and the Museum of the American Indian in Washington, D.C. My tours of multiple cemeteries across the country were also very fruitful. I also toured a local funeral home, the “memory room” of our hospital (where perinatal loss photos and memory boxes are created), and an Angel of Hope infant memorial in St. Louis, Missouri. Photos were taken where allowed and appropriate. I attended two funerals of adult family members of informants. A remarkable opportunity arose to visit the homes of bereaved Amish parents in Pennsylvania with a palliative care nurse who works with these families. Because this book seeks to understand a narrow topic (pregnancy and infant loss rituals) in the context of many cultures, we were limited in our depth of understanding of any particular culture. However, through my interviews and tours, I identified an amazing set of co-authors who have made this ethnographic study come alive. Some speak for themselves, and some speak for others whom they know well. While I sought to understand the cultures and religions as much as possible, my co-­ authors are the real experts on the subject matter of the subsequent chapters. Because there is so little published on this topic, the book’s rigor and richness comes from the expertise of the co-authors who are interpreting and describing the lived experiences and words of bereaved parents. In most chapters, these parents are invited to speak for themselves. We have made every effort to recreate for readers the intense reality of perinatal loss and grief.

A Brief History of Pregnancy and Infant Loss Theories about the causes of miscarriage abound in the historical literature, and often the woman is blamed or feared. In ancient India, people believed that the blood of a miscarried fetus contained a demon which could be spread to other women, so the cloth containing the blood from the miscarriage was discarded (Cox 2020). Women who miscarry in Eskimo culture were blamed for having broken

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taboos, bringing impending evil that could contaminate others from a vapor rising from her (Sha 1990). Cox (2020) writes that “In the European Middle Ages, an increasingly pious culture placed more blame and restrictions on mothers during pregnancy, requiring bed rest and confinement. Fright, blaspheming, strong emotions, sneezing, riding in a carriage, heavy lifting, and being conceived under bad planetary alignment were all thought to cause miscarriage.” Blame of the mother was commonplace in many societies, with accusations of her having committed adultery, lifting something, breaking some other taboo, engaging in witchcraft, or having been cursed by someone (Sha 1990). Women who were “nervous” or “of delicate form” were felt to be most likely to miscarry. Too much intercourse could cause miscarriage, as could reaching for a pitcher over her head, taking a warm bath, etc. (Sha 1990). While most cultures did accept that miscarriage is a natural event, many women continued to feel isolated, blamed, and stigmatized for their losses. They would go to great lengths to take herbal treatments or charms that might help, avoid certain foods, odors, tasks or positions, and perform rituals such as making an offering or sacrifice to a god to drive off evil (Sha 1990). In ancient Egypt, Isis (the God of pregnancy and fertility), “was believed to have inserted rolled papyrus in the shape of a knot into her vagina acting as a plug to prevent miscarriage of Horus, her son. Pregnant women would mimic this act to keep their pregnancies safe. Uterine magic was commonly practiced; the uterus was believed to be a separate entity within the body and magic attempted to control its unpredictable behavior. Primarily spells and prayer were used to control the timely opening and closing of the uterus, thus preventing miscarriage” (Cox 2020). The Anglo-Saxons had a series of rituals for women who have had a miscarriage to prevent a future one. She would step over the grave of a dead man three times, asking to prevent another “hateful misbirth” (Sha 1990, p. 97). When she conceived again she would step over a living man asking for this baby to live, and if she reached quickening (fourth month), she would approach the altar at her church and proclaim “To Christ I have declared this child announced” (Sha 1990, p. 98). In Victorian society, pregnancies were hidden with corsets attempting to conceal the condition as much as possible (Sha 1990). Only the outcomes of successful pregnancies (healthy babies) were recognized, so it was “no wonder that miscarriage was considered a nonevent in our society—for everyone but the parents” (Sha 1990, p. 63). In Colonial America, Friedenfelds writes that: Women experienced pregnancy in an era when life was always uncertain, the faithful were expected to trust God and submit to fate, and women were celebrated and respected for the bounty of their wombs. Childbearing could be exhausting and difficult, but children came when they came, and the process was largely regarded as inevitable and simply part of the natural and religious order of things. Early and abrupt endings, too, were part of the God-­ given order. Pregnancies came frequently and were regarded as tenuous until late in gestation. In an era when families frequently lost infants and children to infectious disease, early pregnancy losses received little attention (Freidenfelds 2020).

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For enslaved women in America, pregnancies were often forced and even those who had desired pregnancies dreaded knowing that their children would also become property of their slaveowners (who were often their fathers). More than half of the pregnancies of slave women ended in stillbirth, infant mortality or death in early childhood (Morgan 2004), twice the frequency of such outcomes for their white slaveowners. After importation of slaves was banned, but prior to abolition, slave women, like cattle, became the sole commodity for augmenting the chattel wealth of their slaveholders through “their increase” (babies) (Morgan 2004). For much of human history, losing a pregnancy or a baby was commonplace, and many of the beliefs, practices, and rituals described in this book likely arose out of pragmatic needs. It was not feasible for most women to observe a prolonged period of mourning after an infant death when her daily tasks were required for survival of the remaining children. However, the frequency of perinatal loss and the practicalities that may have led to minimizing mourning requirements do not indicate that the mothers did not feel grief. It is possible that in the past, infectious concerns as much as spiritual demands led to the extensive bathing of the deceased’s body and subsequent ablution of the washers that is practiced in Judaism, Islam, and other religions. While pregnancy loss was common, Sha explains: Some people think that, because so many babies were lost to illness, miscarriage was considered a trivial event in the past. This is not true. Although people in the past were more attuned to the cycles of life and were better prepared to handle death than we are today, parents have always grieved over losing a wanted child during a known pregnancy, even when they had many children. And there have always been women who had no live births, only miscarriages. These women did not pass off their miscarriages as trivial, or fail to notice that they had occurred (Sha 1990, p. 71).

At the turn of the twentieth century, nearly 10% of American infants died in the first year of life, and 0.6% of mothers died. With improved obstetrical and neonatal care, infant mortality between 1900 and 1997 fell 90% (to 6/1000) and maternal mortality fell 99% (to 0.1/1000 year). This dramatic decline is the result of improvements in sanitation and hygiene, nutrition, widespread availability of antibiotics and improved medical care, as well as declining fertility rates. Regrettably, preventable deaths still occur, as demonstrated by the wide disparities in infant and maternal mortality between people of color and whites, with Black mothers and babies most at risk. Black infants are over twice as likely to die as their white counterparts (10.6/1000 vs 4.5/1000) and Black women are more than 3 times as likely to die in childbirth. In the USA, the lowest infant mortality rates are in Non-Hispanic Asians at 3.4/1000 (cdc.gov) (Achievements in Public Health 2023). Despite lower rates over the past century, it is still common for women and their families to experience pregnancy and infant loss. About 15–24% of US pregnancies will end in miscarriage and 5/1000 women will lose an infant in the first year of life. The definitions of different types of perinatal loss and rates are given in Table 1.1.

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1  A Spectrum of Loss: Introduction to Perinatal Loss and Bereavement Table 1.1  Definitions and rates of types of perinatal loss in the USA Term Miscarriage or spontaneous abortion

Stillbirth or intrauterine fetal demise (IUFD) Perinatal death

Neonatal death

Age at the time of death