Father of baby born with terminal illness: 'No changing the fact she would die'

Royce and Kerri made the decision to carry their baby to term after learning that she did not have a brain so that they could donate her organs.

In a moving essay on the blogging platform Medium, the father of a baby born without a brain whose story went viral explained the devastating moment he and his wife discovered she would be stillborn.

“We felt cheated,” Royce Young wrote. “What a total rip-off. The word I still have circling in my head is disappointment. That doesn’t really do it justice, because it’s profound disappointment. Like the kind that is going to haunt me forever.”

PARENTS WHO CARRIED BABY WITHOUT BRAIN TO TERM SAY HEARTBREAKING GOODBYES

Young and his wife, Keri, had shared their story about their unborn daughter Eva, who at 19 weeks was diagnosed with anencephaly. Eva’s brain was missing the frontal lobe and the top part of her skull. Within minutes, Keri asked her doctor whether carrying Eva to term would mean that her organs could be donated.

“We decided to continue, and chose the name Eva for our girl, which means ‘giver of life,’” Young wrote in his latest post. “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.”

The Youngs consulted with LifeShare, and Oklahoma-based organ procurement organization, and arranged for Eva’s organs to be donated, but she would have to be born with a heartbeat for them to be viable. Keri was scheduled to hit full term on April 16, so doctors scheduled a May 2 caesarian-section birth.

“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,” Young wrote. “The kicks and punches to Keri’s bladder serving as a constant reminder of what was inside.”

Still, Young wrote that they found joy in Eva’s pregnancy as they began talking to her and telling their son, Harrison, about his baby sister. Along the way, Young said he allowed himself to fantasize about the potential lives that Eva would be saving with her organs. He envisioned attending graduations and weddings of the recipients.

“We had to make concessions with the transplant doctor, things like agreeing to intubate Eva shortly after delivery. But we were willing, because regardless of our parental instincts to want to love and hold her for as long as we could, we also very clearly understood the inevitable,” he wrote. “There was no changing the fact that she would die. And we didn’t want to let five extra minutes with us get in the way of what could be a lifetime for someone else.”

However, on April 16, Keri stopped feeling Eva’s movements. An ultrasound revealed that her heart had stopped beating, and Eva was stillborn.

“We had tried to do everything right, tried to think of others, tried to take every possible step to make this work, and it didn’t,” Young wrote in his post. “No organ donation. Not even for the failsafe, research.”

Keri was induced on April 17, and Eva was born minutes later. Though the Youngs were grieving for the potential hope they had found in Eva’s organ donations, a coordinator at LifeShare was trying to contact them at the exact moment of her birth to let them know she had found a match for her eyes. The occasion marked the first time in the state of Oklahoma that a donor would give two full eyes to a recipient.

When nurses handed the Youngs their “superhero,” her eyes stayed closed, and they fought the urge to take a peek at what color they might be. Young said that while he grieves not having had the chance to meet Eva as her father even just for a few seconds, his new fantasies about his daughter involve imaging what her eyes will see.

“In some ways, though, I’m more excited about her eyes being her living legacy,” Young wrote. “I keep thinking about looking into them some day, but more than anything, about her eyes seeing her mom, dad and brother.”

In addition to donating her eyes, LifeSpan is creating a newborn protocol for organ donation with other organizations, and are calling it the Eva Protocol.

Young's post appears in full here.