Parental “Holding and Letting Go” in End-of-Life Decision Making in the Neonatal Intensive Care Unit

By the time an infant is born, his or her life has already been woven into a family narrative that forms part of the identities of parents and family members. The parents have often begun holding an identity for the expected child and begun processing their own new identity as a parent. Philosopher Hilde Lindemann calls this narrative process “holding in identity.” When a neonate is born prematurely or with severe illness, this emerging narrative can be altered or even interrupted, leaving parents in a situation, not just of fear and uncertainty, but also questioning their own identity as parents. This article builds on Lindemann’s theories of family holding infants in identity at the beginning and end of life to explore the work that must be done by all parents of a newborn, and to consider the effect that family narrative might have on decisions at the end of life in the neonatal intensive care unit (NICU). I argue that, even early in life, conflicts over a child’s best interest might be framed as misunderstandings or misconceptions about the child’s and the parents’ identities. This article highlights parents’ difficulties adapting to their new parenthood in the NICU environment, examines the common narrative of the baby as “fighter,” and explores the need for parents to “let go” as part of consenting to the withdrawal of aggressive treatment at the end of life. In order to support family in the difficult task of choosing a premature ending to their severely ill child’s life narrative, we must understand the relationship between parent and infant as they struggle to get to know each other in the alien NICU environment.