Afterword

The author is an African American neonatologist who has worked in a neonatal intensive care unit (NICU) for the past twenty years. Despite belief systems being unique and diverse, he believes they serve an important role in society, especially in the context of NICU care. In this chapter, the author attempts to describe what he considers to be some salient points about being a provider in the NICU and the role that a family’s belief system plays in critical and end-of-life care for their newborn. He tries to emphasize how belief systems are complex and personal.

Shiva’s Babies

Discussing religious views from within any tradition is challenging because they are not monolithic. However, it is worth exploring religious perspectives because they are often the foundation, whether conscious or not, of the reasoning underlying people’s decisions. Following a brief discussion on the importance of cultural humility and understanding the worldview of patients, the author focuses on Hindu perspectives regarding the care of infants in the neonatal intensive care unit. Along with applying six elements of Hindu thought (underlying unity of all life, multivalent nature of Hindu traditions, dharma, emphasis on societal good, karma, and ahimsa), the author incorporates perspectives of Hindu adults, living in the United States, who responded to a nationwide survey regarding the care of high-risk newborn infants in the hospital.

Introduction

There is evidence that religious beliefs strongly influence families’ treatment decisions about their loved ones, especially when difficult life-and-death choices must be made. This becomes important in the context of neonatal intensive care units (NICUs) committed to family-centered care because families’ beliefs will influence their decision making. To assist NICU professionals, families, and students of bioethics, the chapters in this book seek to address the question, “What are the teachings of the world’s major religious traditions about the status and care of the newborn?” This introduction presents six “take-home” insights derived from the discussions that follow.

Life Before Birth

Buddhists acknowledge no central institutional authority. Ethical issues are approached very differently in the widely diverse Buddhist traditions that have developed over more than 2,500 years. This chapter considers questions related to the cessation or withdrawal of treatment for high-risk newborns within the context of Buddhist ethical values and principles—both in general and in a range of Buddhist traditions, many of which are influenced by non-Buddhist beliefs and practices. The chapter also reflects on the ontological and ethical status of newborn infants cross-culturally and explores the diversity of Buddhist beliefs and practices related to bioethical decision making by religious leaders, medical professionals, lawyers, and parents.

Seventh-Day Adventists and Care for the Newborn

As a practical expression of their faith, Seventh-day Adventists have established healthcare institutions, including facilities for the intensive care of newborn infants. This chapter provides a brief history of Adventist engagement in health care and seeks to explain how core Adventist convictions provide the motivation for providing such care and shape the way it is given. The chapter also describes how Adventist beliefs may affect the ways in which Adventists or their family members receive health care. This includes beliefs in divine creation, human wholeness, freedom of conscience, spiritual commitment to health, and worldwide mission. Adventists believe that, by the Creator’s design, each person is a spiritual and physical unity. Using the example of a specific case of neonatal intensive care, the chapter explores how Adventist convictions are likely to support and inform caregiving and care receiving. Also described are Adventist principles for end-of-life care.

A Muslim Neonatologist in a Canadian NICU

What is the impact on a Muslim family of having a baby in the neonatal intensive care unit (NICU)? This chapter is written by a Muslim neonatologist, trained in the United Kingdom and Canada, who now works in a level III NICU in Edmonton, Canada. In addition to describing religious requirements and community traditions, the author suggests ways that these can be incorporated into the care of Muslim babies and families in our high-stress, technology-based NICUs. As a member of the Dawoodi Bohra sect (a subset of the Shi’a Muslim community), the author provides a brief background of the community’s spiritual heritage and their viewpoint on modern medical treatment. The living spiritual leader of the Dawoodi Bohras, the Da’i, is their source of authoritative decision making. The author explains how and why decision making in situations of critical illness is referred to the Da’i for His trusted advice.

Muslim Biomedical Ethics of Neonatal Care

This chapter outlines Muslim ethics and practices surrounding the birth, care, and death of neonates, with special attention to gender dynamics in Muslim families. In the absence of unified Islamic law-making bodies that decide on issues of biomedical ethics, it is crucial to explore questions of authority over decision making, which is often a highly gendered issue. The central questions that arise in neonatal cases are: When is it appropriate to withdraw treatment? What rituals surround the births and deaths of neonates? and Who has the authority to make decisions? The author divides Muslim practices into two main paradigms: those based on scripturally dependent beliefs and those based on ritually dependent beliefs. It is important for medical practitioners to be aware of gendered concerns and differences between ethicolegal theory and ethical praxis in decision making in neonatal care. Muslim beliefs and practices cannot be reduced to texts.

Spirituality in a Time of Crisis

American mainstream Protestants are diverse, but several common religious motifs are likely to surface when caregivers and family members are faced with caring for a high-risk newborn. One of the first will be theological questions about cause or responsibility. Did I (or we) do something to cause this? Why is God letting this happen? Is God testing us? A second motif has to do with how to mark religiously the acceptance of the gift of the baby’s life. Although for Protestants there is no concern about the salvation of a baby dying without baptism, a hospital baptism can be the strongest possible affirmation of the life that is present, is soon to be gone, and yet will be fulfilled in some unspecifiable or mysterious way. A third motif draws these first two together. Caring for the high-risk infant can call out or create reserves of personal and spiritual strength.

Reading Tragedy through the Christian Story

This chapter tells the story of a Mennonite couple whose fetus was diagnosed with Trisomy 13. By exploring the heartbreak that dying or stillborn babies evoke, this essay not only explains evangelical Mennonite beliefs but also displays how such faith shaped the response to that tragedy. Their story encourages medical professionals to engage with Christian patients, coming alongside them as parents access their faith and, when possible, enabling them to attach to their infant with a limited future. In doing so, healthcare providers collaborate with families of faith to create sacred spaces even in the valley of the shadow of death. These reflections also issue a challenge to medical personnel, pressing them to attend to their own grief. Defying our efforts to ignore it, the emotion of grief refuses to be neglected and instead can arise unheeded to choke out compassionate care.

Moral Status and Care of Impaired Newborns

This chapter addresses the question of moral status and care of impaired African American newborns from the perspective of African American Protestant Christian theology and spirituality. It argues that healthcare professionals must take seriously the impact of race and racism on the disparate health outcomes of African American newborns and maternal reproductive health. Moreover, it suggests how resources from the black Christian tradition inform the understanding of a high moral status of severely impaired newborns with a limited life expectancy in a way that does not require a vitalist approach in end-of-life decision making for these precious little ones.