Kids Meet a Terminally Ill Person | Kids Meet | HiHo Kids
Parents of Terminally Ill Baby Talk About the Devastating Decision to Carry Her to Full Term
Royce and Keri Young first learned their baby was sick back in December at their 19-week check-up: "As a parent, you think that appointment is all about finding out boy or girl, but it's about a whole lot more," Royce wrote in a now-viral April 27 Medium post. "In our case, our daughter was diagnosed with a rare birth defect called anencephaly."
Anencephaly affects about three in every 10,000 pregnancies and is an oftentimes-fatal birth defect in which a baby is born without parts of a skull and brain. Knowing their baby girl would either die almost immediately or have to be kept alive by machines, the Youngs had to decide whether to induce labor and effectively end the pregnancy or to carry her to full term so she could donate her organs:
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.
When Keri hit 37 weeks on April 16, she couldn't feel Eva move as she normally did. The Youngs ended up in the hospital two weeks ahead of their planned C-section — within hours of arriving, they were told Eva no longer had a heartbeat, essentially making her "gone before we ever got to meet her. The brain controls steady heart functions, and Eva's finally gave out." It also eliminated the possibility that Eva's organs could be donated, which left Royce feeling "cheated":
We felt cheated. 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's going to haunt me forever.
With photographer Mitzi Aylor in the room, Keri gave birth, devastated. It wasn't until Royce got a call from LifeShare, the organ donation organization they'd planned to work with, that they finally received any form of good news: Eva's eyes could still be donated, making her the first "ever — not baby, but person — in the state of Oklahoma to donate a whole eye, and she donated two," Royce wrote. He said receiving that call was both the best and worst moment of his life.
"We always wondered things about Eva, like what color her hair would be, if she'd have Harrison's nose, if she'd have dimples like her mama, or what color those eyes would be," he concluded his post. "I can't ever hold my daughter again. I can't ever talk to her or hear her giggle.
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