Especially not with the way it happened.
So here’s the backstory: 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 literally 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.
Listen: What do you say to someone who’s lost a baby? (post continues after podcast)
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. It was a practical approach, with an objective for an already settled ending point. We met with an organ procurement organization called LifeShare of Oklahoma and found out we’d be the eighth family to donate the organs of an infant in the state. There wasn’t much of a precedent or process in place, because until only recently, most parents of anencephalic babies didn’t know it was an option. Heck, our maternal fetal medicine doctor, who specializes in cases like ours, didn’t even know. You see, there’s this weird grey area involved because even without a brain, these babies can’t be declared brain dead. Her heart would need to stop beating, leaving a finite window of, let’s call it opportunity, to recover her kidneys, liver and maybe pancreas and heart valves. We asked about other things, like her eyes or corneas, but LifeShare told us they’d never done that before, even with an adult.
Part of the difficulty of the decision to carry on was in the physical pregnancy, and the mental burden of carrying a baby for 20 more weeks knowing she would die. The kicks and punches to Keri’s bladder serving as a constant reminder of what was inside. (By the way, yes, Eva kicked like any other baby; her brainstem was complete, which is what controls basic motor functions. I know, we had a hard time wrapping our minds around it, too.) She feared people asking what she was having, or the due date, or if the nursery was ready.