One of the most important moments in a couple's life is when they are expecting a baby. They are planning the nursery, holidays, and the first day of school. This is a great period of anticipation and joy. My wife and I found out we would be the proud parents of a sweet little girl named Abigail Grace. We knew she would be beautiful. In those same moments of incredible joy during the ultrasound, our world was shaken as we found out she had the diagnosis of Alobar Holoprosencephaly. Our tears of joy were soon tears of sadness and despair. We were no longer planning the future for our baby girl. We were now in shock and having to face the unknown of medical decisions and a possible goodbye.
Most families in this scenario do not have many people to turn to. Most end up traveling this journey alone. Some just hide. For my wife and I, it was a different story. We were placed in the hands of a team of medical professionals and support staff that stood up during a time when we were most alone; the Perinatal Hospice team. During the next 20 weeks of my wife's pregnancy, we were no longer traveling this difficult journey by ourselves. We had a team that was willing to answer every question we had and explain every scenario we could possibly face. The day of my daughter's birth and the five days she lived in our arms were the most beautiful and peaceful days my wife and I have ever lived. The five days that our daughter lived might have been five days of her not being held, undergoing shunt surgery, and not getting to experience life's beauty and love. Our perinatal hospice team was there for us then and is still with us now because the pain and tears of a loss never go away.
I cannot advocate enough, as a parent who has lost a child and as a pediatrician, that every hospital needs a perinatal hospice.