Couple Carrying Terminally Ill Baby to Term Speaks Out: 'Once We Kiss Her and Say Goodbye, She's Gone'

Royce and Keri Young will only spend up to 36 hours with their newborn baby before the infant succumbs to a rare, deadly disorder

Royce and Keri Young will welcome their second child — a little girl — in just a few months, but they’ll only spend up to 36 hours with their daughter before the little girl succumbs to a rare, deadly disorder.

The Oklahoma couple learned that their unborn baby, Eva, has Anencephaly, a rare condition in which an infant is missing the cortex of their brain. However, Keri plans to carry the child to term, and donate the baby’s organs to children in need.

“She’s gonna do more in her 24 hours or whatever than maybe we’ll ever do in our lives,” Royce told ABC News in an interview that aired Wednesday on Good Morning America. “To be able to remember our daughter in that way is pretty powerful.”

Mitzi Aylor / Aylor Photography

Keri and Royce went into their 19-week ultrasound appointment in December excited to learn the sex of their baby, only to receive the heartbreaking news.

“[The doctor] literally opened the door and said, ‘I’m really sorry to have to tell you this, but your baby doesn’t have a brain,’ ” Keri told ABC. “The first 48 hours were very dark and very heavy and very testing, I guess, in a way.”

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Royce reflected on the realization that his daughter would not survive long after delivery.

“You can make plans and you can prepare yourself but, like, once we kiss her and say ‘goodbye’ she’s gone,” he said. “It is final.”

Mitzi Aylor / Aylor Photography

The couple’s story made headlines after Royce, a writer for ESPN, officially opened up about the situation in a Facebook post in February.

He uploaded a photo of his sleeping wife alongside the lengthy post about his unborn daughter, writing, “A lot of people say things like, ‘I wouldn’t change anything’ after a trying circumstance, but I’m not about to say that. I would definitely change this if I could. I want my daughter to be perfect.”

Keri and Royce told ABC that they considered terminating the pregnancy, but decided against it.

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“You can be the most pro-life person in the world but until you sit there and you hear those words and you look at your future going forward, that’s when you gotta face the reality and make your own decision,” Royce said.

So, the family decided to donate the little girl’s organs, with the father telling ABC: “There’s another family out there hoping that their baby’s gonna get a kidney, knowing full well that that means that somebody else is gonna have to go through heartbreak. ”

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He added: “They’re praying for a miracle themselves. Eva can be that miracle.”

Royce noted that he and his wife found “freedom” in their decision to use Eva’s life for good.

“As long as she lives — 24 hours, 48 hours — we realized we’re her Momma and her Daddy and we gotta do our job,” the father said.