Parental Decision-Making: Navigating the Medical Ethics of Neonatal Intervention in the 21st Century

Hypoplastic Left Heart Syndrome is a congenital heart defect in which the left chambers of the heart are underdeveloped and, if left untreated within the first week of birth, is a fatal condition. Via personal interviews, extensive research on the progression of neonatal intensive care through the Ridge Collection in the advent of modern medicine, and analysis of shared stories of loss, this creative project will recount the medical journey of my younger sister, Kathleen, one of the oldest individuals living with this rare heart defect. Narrative medicine weaves the emotional with the scientific, vividly illustrated in my sister’s condition and the unwavering community that has navigated the unknowns alongside her. This work of creative nonfiction will address the following aspects of medical ethics with regard to neonatal intervention: first, unpacking the parameters of a life “worth” living; second, elucidating the relationship between quality of life and letting go specifically when the pressure of such high-stakes decisions is placed upon emotionally distraught parents; and third, when applicable, examining legal and ethical implications of technological advancements in Western medicine as they pertain to prolonging life. Though a niche story within the scientific realm, this is an uncertain and complex experience that warrants further exploration