Creating Memories with a Terminally-Ill Neonate

Abstract

Dealing with a terminally-ill neonate has a significant emotional toll for both the parents and the entire family. The experience of creating memories with a terminally-ill neonate can be deeply emotional and challenging, but it can also be profoundly meaningful and comforting for both the family and the neonate. Memories may involve celebrations related to naming or milestone celebrations, parental involvement in neonatal care and spending quality time with the neonate as well as creating mementoes, capturing or videotaping moments. The creation of memories, despite the neonate’s limited lifespan, acknowledges its individuality and affirms its dignity and identity as a human being, whereas it creates a sense of unity during such difficult times. Specialized multidisciplinary teams, with advanced training and professional skills, and national initiatives are critical for families’ support to the grieving process and their guidance to emotional and ethical complexities associated with the caring of a terminally-ill neonate.