Father of Terminally Ill Daughter Opens up About Her Death

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As parents, tough decisions are made every day when it comes to raising your children. But for Royce Young and his wife Keri, the toughest decision of all came even before their second child, daughter Eva was born. 

During the pregnancy, the parents were faced with the news that little Eva was terminally ill and would likely not survive after birth. Still, they carried her to term, a heart-wrenching choice that Young is now opening up about, according to PEOPLE.

“We spent months bracing and preparing for the death of our daughter,” he writes on Medium. “But guess what? We weren’t ready.”

Their decision was an agonizing one, but the couple made it with the intention of donating her organs to babies in need. 

MORE: The Woman Who Carried Her Terminally Ill Baby to Term in Order to Donate Her Organs Gave Birth

“We decided to continue, and chose the name Eva for our girl, which means ‘giver of life,'” Royce writes. “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.”

Eva, who was diagnosed with Anencephaly, a rare condition in which an infant is missing the cortex of their brain, was delivered early despite the couple's planning for a C-Section to maximize the chances of seeing Eva alive. 

We said hello and goodbye to our sweet Eva Grace yesterday. Eva Grace Young -- 4-17-17

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“We wanted to maximize our chances of seeing Eva alive, and be able to control as many variables as possible. That way there wouldn’t be any surprise labor in the middle of the night, and we could have Harrison there to meet his sister, and grandparents ready to hold their granddaughter even if she was only alive for an hour or so,” he writes. “It was something Keri had to grieve as well, giving up a vaginal birth for our next child.”

When they arrived at the hospital after Keri felt minimal movement from Eva, they were told they needed to prepare for an emergency C-Section. The baby's heart had stopped. Young recalls the moment in heartbreaking detail in his post. 

“Keri rolled onto her side and put both hands over her face and let out one of those raw, visceral sobbing bursts,” Young writes. “I stood silently shaking my head. 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. No organ donation. Not even for the failsafe, research. We felt cheated.”

But, before they were even able to hold Eva to say goodbye, they were informed that LifeShare Oklahoma had found a recipient for Eva's eyes. 

“The timing of it all is just something I can’t explain. It wasn’t what we planned or hoped for, but it was everything we needed in that moment." 

He shares that while he can never hold his daughter again, he holds out hope that one day he might be able to see what color her eye's wound up being. 

“In the time we spent with her, one was always just a little bit open, and I fought the temptation to peek. I can’t ever hold my daughter again. I can’t ever talk to her or hear her giggle,” he writes. “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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