‘Whatever decision you make it will be the right one’: A parent's reflection on difficult decision‐making in premature birth

Abstract

In 2007, our daughter Lily was born prematurely. My husband and I were faced with a very difficult decision about the level of intervention for her, a decision that had to be made in an emergency situation under the pressure of time. As a paediatric nurse I had more knowledge about prematurity than most parents, and it was certainly enough to appreciate the fragility of babies born early, and their uncertain and often complicated path through neonatal intensive care. What I didn't fully appreciate was the key role of health professionals, not only in providing care, but in supporting difficult decision-making. In the years since Lily's birth I've also reflected on the power of health professionals to shape, or reshape, the narrative of premature birth which is pivotal in the long-term psychological trajectory of parents.