When I first found out that our unborn daughter had a life-limiting condition (trisomy 18), I was living in London and having prenatal care at a National Health Service (NHS) hospital. Individuals there were very caring and kind, and I am grateful for them, but there was not any formal package of care in place for women who wanted to carry on with their pregnancy in such difficult circumstances. It was “stiff upper lip” and get on with it as best as you could.
Moving to Kansas City in the course of the pregnancy, I experienced how different the journey can be when given phenomenal levels of support. Our care team at the hospital was pro-active about helping us prepare for our daughter’s birth, life and death. We were connected with the genetic counselor, the palliative care team, two perinatal hospices, as well as the neonatologist, and labor and delivery nurses. There was no sense that we were to be left on our own to tough it out.
When Margaret was born, our decision to provide comfort care for her was respected and honored. Even though no monitoring or treatment was being provided for her, the doctors performed daily physical exams without fail and spoke with us to share their assessments and to answer our questions. The example provided by these physicians showed me that medical care is so much more than the technical and the curative. What a testament to their humanity that this very fragile baby’s life mattered so much!
There was also a real commitment on behalf of healthcare professionals to make her life meaningful and full of memories. Would I have thought of having someone come in to take photos or doing a footprint, without the sensitive guidance of those who were experts in the art of ministering to families in situations like ours? Perhaps not. Margaret lived two very precious days and died in our arms: We are entirely blessed to have lived these days to the fullest.
What do people need to know when they receive the news that their baby has an anomaly or a serious health condition? They need to know that although this is not what anyone would want for their child, their child is still beautiful, and that they will manage. They will manage because people will walk with them — both old friends and new friends — and help them through.
Hilary Larkin, PhD, is the mother of three children: Margaret, about whom she wrote this article; Cecily, 2; and Edmund, age 3 months. Her husband is completing his residency training in Pediatrics and will enter a fellowship program in Pediatric and Perinatal Palliative Care.