More than a diagnosis

Three women speak of and analyse their abandonment by healthcare professionals in the past five years following their foetus' diagnosis of a genetic disorder during pregnancy. 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. At my second ultrasound I found myself panicking over my lack of specialist support. Liam had numerous medical complications and no one had spoken to me about his care. Sadly, it was my obstetrician's lack of referral that left me feeling professionally abandoned

Stronger and More Vulnerable: A Balanced View of the Impacts of the NICU Experience on Parents

For parents, the experience of having an infant in the NICU is often psychologically traumatic. No parent can be fully prepared for the extreme stress and range of emotions of caring for a critically ill newborn. As health care providers familiar with the NICU, we thought that we understood the impact of the NICU on parents. But we were not prepared to see the children in our own families as NICU patients. Here are some of the lessons our NICU experience has taught us. We offer these lessons in the hope of helping health professionals consider a balanced view of the NICU's impact on families