Wednesday, February 5, 2025
2/5/2025
Project Summary/Abstract Life and Death in the Nursery will analyze the emergence of a new subspecialty – neonatology – and the medical technologies employed by neonatologists. The development of new sophisticated machinery meant that clinicians were now able to keep infants alive who in earlier years would have died. In the 1960s, hospitals around the country established NICUs. Clinicians and parents approached this highly technological world with worries over the health and lives of severely ill newborns and negotiated significant medical ethics questions about life, death, and quality of life. They debated these questions within the emerging bioethics’ movement and in a larger social and cultural context in which attitudes about reproduction, disability, quality of life, and death and dying shaped their respective understanding about the ethics surrounding life and death. I will investigate how health care providers and parents experienced the NICU, how it shaped their identity, and what impact their personal position and understanding of neonatology had on their clinical experiences. The book will focus on the impact that changes in medical technologies, reproductive politics, our understanding of disabilities, and attitudes about race had on clinical care and the ways these changes shaped medicine in the NICU. This analysis not only sheds light on the history of neonatology itself, but also points to ongoing dilemmas in medicine: decisions about the continuation/ discontinuation of therapies at the edges of life and death, as well as the pervasive existence of health inequities. Clinical issues inside the NICU are embedded in a larger context of women’s reproductive health care. Much happens to women, their pregnancies, and fetuses before infants enter the NICU and these events determine the problems with which infants present. How women become pregnant, what kinds of screening and prenatal care they receive, their access to abortion care, and how they give birth has changed significantly over the course of the last six decades, leading to concomitant shifts in the demographic characteristics and clinical problems of NICU patients. Taking the NICU as a focal point, my study addresses larger questions about life, death, and quality of life that continue to be of importance in clinical care – in the NICU and beyond: How do therapies, treatments, and procedures in one medical specialty shape the clinical problems in another? How should clinicians balance rapid technological and therapeutic innovation with the development of standards of care? In an area of rapid innovation, where therapies quickly move from experimental to innovative, routine, and outdated, how do researchers adhere to treatment protocols and informed consent? And how do patients and family members understand and participate in clinical decision making in a specialty where so much seems at stake and hopes are so high?
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