Couple carries baby without brain to term, in order to donate organs

In December, my wife Keri and I went in for the standard 19-week anatomy scan of our second child. As a parent, you think that appointment is all about finding out boy or girl, but it’s about a whole lot more. In our case, our daughter was diagnosed with a rare birth defect called anencephaly. Some three in 10,000 pregnancies rare. Congratulations to us. The phrase our doctor used in explaining it was “incompatible with life,” which looks as terrible in words as it sounds. The child fails to develop the frontal lobe of the brain, or the top of their skull. The chance of survival is literal zero percent. If you’re Googling it now — first of all, don’t click images — and see a story about a baby that has lived a lengthy time with anencephaly, either the baby doesn’t actually have anencephaly, or it’s being kept alive with every life support function possible. So we sat in a doctor’s office, five months before our daughter was set to be born, knowing she would die.

The options weren’t great. There was a) inducing early, which in effect was terminating the pregnancy or b) continuing the pregnancy to full-term. Maybe you heard our story already, but within a minute or so of finding out, Keri asked if we could donate the baby’s organs if we went to full-term. It was on her heart and mind, but we left the doctor and still spent the next 48 hours deciding what we were going to do. It was excruciating. We considered terminating. We had to. Were we capable of taking on the weight of the 20 weeks ahead? In our minds, we were intentionally taking on the loss of a child, rather than the loss of a pregnancy. And yes, there is a difference.

We decided to continue, and chose the name Eva for our girl, which means “giver of life.” The mission was simple: Get Eva to full-term, welcome her into this world to die, and let her give the gift of life to some other hurting family.