Father of Terminally Ill Baby Carried to Term Opens Up About Her Death: ‘We Felt Cheated’

An Oklahoma City couple lost their second child, Eva, last week, and the father, Royce Young, wrote about the painful and heartbreaking decision to bring the baby to term knowing that their daughter would not live longer than a few days or even hours. 

Young, an NBA writer for ESPN, shared his story in an emotional essay for Medium.com that has gone viral. “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,” he wrote. “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 couple, who are already parents of a young son, Harrison, talked about their options. “We considered terminating. We had to. Were we capable of taking on the weight of the 20 weeks ahead?” he continued. “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.”

After some soul-searching, they came to the decision to donate their daughter’s organs, so another child could live. “We decided to continue, and chose the name Eva for our girl, which means ‘giver of life,’” Royce wrote. “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.”

Royce said Keri bore the weight of both physical and mental burdens associated with arrying a baby for five more months knowing that she will die. “We saw 4D ultrasounds of our girl, and took Harrison to see her. The first one, he said, ‘That’s my sister! I have a sister!’” he recalled. “My nose burned and eyes filled up with the watery stuff. Especially when I realized that eventually he’d be saying, ‘I had a sister.’”

Royce and Keri met regularly with the LifeShare of Oklahoma organization and doctors to plan the organ donation process. The couple decided to have a planned C-section on May 2 to maximize their chances of seeing their daughter alive, and to increase the odds of Eva’s organs being donated or used for research.

Two weeks before the scheduled due date, Keri couldn’t feel Eva move, and when they went to the hospital, they couldn’t find a heartbeat. Keri was rushed into an emergency C-section, Royce recounted. “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,” he wrote. “No organ donation. Not even for the failsafe, research. We felt cheated.”

After tragically losing Eva before birth, they got a happy surprise: LifeShare had a recipient for Eva’s eyes. “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,” he wrote. “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. … 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.”

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