More than a diagnosis

Abstract

As educated women, we were bewildered by our medical care, or lack thereof. Following prenatal diagnostics of trisomy 13 or 18, we chose to continue our pregnancies. We understood that our babies would most likely die in utero or soon after birth. To enable ourselves to make informed choices, we sought information from the internet. Here, it was discovered that some babies with these trisomies can live contented, comfortable lives for many years. We considered this information as well as the anomalies of our unborn and planned accordingly. We did not want our babies to receive nonbeneficial, burdensome interventions, nor did we want them to suffer. Our hopes were not for a miracle but were much simpler: to meet and hold our babies and to be a family. Although our children, choices and outcomes are unique, we all hoped for time with our babies. We also all wished to be able to make informed decisions that respected the dignity of the fragile lives we carried. IN UTERO Pauline, mother of Liam (trisomy 18) ‘Your baby isn’t going to live’, my obstetrician commented as I sat behind the steering wheel. Although I felt comfortable with him, he supplied me with no information about trisomy 18.