Father shares story of the birth of his terminally ill daughter
Imagine finding out during the 19th week of pregnancy that the baby your wife is carrying doesn’t have a brain. Imagine taking that news in and, in the midst of processing your grief, somehow finding the strength to ask the doctor, “If I carry her full term, can we donate her organs?”
Then imagine carrying through. Royce and Keri Young did just that, and the grieving dad wrote about the aftermath.
When the Youngs learned their daughter would be born without a brain, Royce was astonished at his wife’s immediate reaction — wondering within minutes of getting that awful news if their daughter’s organs could be donated. As the couple endured the rest of the pregnancy, his awe of his wife only grew.
“It’s a weird thing to say that in probably the worst experience of my life was also maybe the best moment of my life, but I think it was the best moment of my life.”
Royce and Keri found out at an ultrasound during the 19th week of pregnancy that their daughter, Eva, had anencephaly, which means she would be born without a brain. To follow through with Keri’s desire to use Eva’s organs to help others, the couple would have to endure the rest of the pregnancy.
“There were plans and contingency plans, and contingency plans for the contingency plans,” he wrote. “I wanted a tangible outcome. I wanted to be able to meet and hug and shake the hand of the person my daughter saved … I couldn’t dream about what my daughter would grow up to be, so I fantasized about the difference she could make.”
It was obvious the road would be long and hard, but not even Royce was ready for the reality of it.
“Keri likes to say, “You think you know, but you have no idea.” Until you put the shoes on and start walking the road, you don’t have any clue. But wherever you fall, we just know that we were empowered by our decision, our responsibility, to be Eva’s mom and dad for as long as we could.”
The selflessness of their decision is beyond measure. And so was the pain and agony, when their daughter’s heart failed before she could be born.
“And on top of it all, the ultimate kick in the gut: We wouldn’t even see her alive.”
Not only would they not have her, her ability to help others by donating her organs was seemingly gone.
“We knew we’d hurt from her loss, but there was a hope in the difference she was making. We heard from recipients of organ donation that were so encouraging and up-lifting. But the deal got altered. The rug was pulled out from underneath us. This was a curveball we couldn’t accept. It felt like we were letting everyone down (I know how ridiculous that sounds). I felt embarrassed because all that positivity about saving lives wasn’t happening now (I know how ridiculous that sounds). All the meticulous planning and procedures, all out the window. I’m telling you, just… disappointment.”
Thankfully, not all was lost.
The day Eva was born, LifeShare Transplant Donor Services of Oklahoma, called to say they’d found a recipient for some of her organs. They spoke to Keri’s doctor and let her know they had found a recipient for the baby’ eyes.
“It wasn’t what we planned or hoped for, but it was everything we needed in that moment. I buried my head in my arms and sobbed harder than I ever have. Keri put her hands over her face and did the same. Happy tears.”
It wasn’t exactly everything they’d hoped, but it was something. Eva had already made an impact on the Youngs, but now she was going to make an even bigger one.
“She’s the first ever — not baby, but person — in the state of Oklahoma to donate a whole eye, and she donated two. Because of her, LifeShare has made connections in other states to set up eye transplants for the future. They have an infant organ donation plan they now are working with that they’d shared with other organ procurement organizations in Colorado and Texas. They call it the Eva Protocol. It’s laminated and everything.”
In the midst of their unimaginable grief, the family had something to celebrate. And for Royce, something to dream of experiencing one day.
“I can’t ever hold my daughter again. I can’t ever talk to her or hear her giggle. But I can dream about looking into her eyes for the first time one day, and finding out what color they are.”