Family Carrying Terminally Ill Baby to Term Open Up About Heartbreaking Decision: We Can’t Wait to Hold Her

Keri and Royce Young, who are carrying their terminally ill baby to term, spoke out about their emotional experience in a new interview with Good Morning America.

The married couple found out in December during Keri’s 19-week ultrasound that their daughter is missing the cortex of her brain. The harrowing revelation made them question God and forced them to make an unthinkable choice, but the pair ultimately decided to continue with the pregnancy so that their baby’s organs can be donated to others.

“The ultrasound tech came in and said, ‘Your doctor wants to see you immediately.’ I mean, she just literally opened the door and said, ‘I’m really sorry to have to tell you this, but your baby doesn’t have a brain.’ And then we both totally lost it. The first 48 hours were very dark and very heavy and very testing,” Keri recalled of her checkup and learning of the anencephaly condition.

Royce, an ESPN reporter, added to GMA: “You can be the most pro-life person in the world, but until you sit there and you, you hear those words and you look at your future going forward, that’s when you have got to face the reality and make your own decision.” (Last month, Royce wrote about the couple’s story in a Facebook post that has since gone viral.)

Keri admits she’s “terrified” about the delivery, but the couple — who already are parents of a young son — are trying to enjoy what little time they have left with the baby. Keri can still feel their daughter hiccup and kick.

“I keep telling people we have a whole lifetime to be sad, after she’s born and after she passes, then that’s sad,” Keri said. “But now, she’s alive and she’s kicked and … for this pregnancy, that’s the most joyful part.”

Doctors have warned the Youngs that the baby won’t survive very long after Keri gives birth. “[It could be] anywhere from five minutes to 36 hours,” Keri said.

“For as long as she lives, 24 hours, 48 hours, we realized we’re her momma and her daddy and we got to do … we have got to do our job,” Royce told GMA. “We look forward to holding her, kissing her, talking to her, telling her about her brother. And to think that that might have to be done in five minutes is really hard.”

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