'My daughter has got a bigger purpose in life:' Family carrying terminally ill baby to term speaks out
The Young family will donate their daughters organs to save the lives of others.
— -- One couple who made the selfless decision to carry their terminally ill baby to term so that her short life can be used to save dozens of others spoke out in an interview with "Good Morning America," saying that their daughter will do more during her short time on Earth "than maybe we'll ever do in our lives."
Royce and Keri Young decided to carry their daughter, who is missing the cortex of her brain, to term so that her organs can be donated to save the lives of potentially dozens of other ill infants.
The couple told ABC News that they found out about their daughter's condition in December when they went in for their 19-week ultrasound, excited to find out whether they were having a boy or a girl.
"The ultrasound tech came in and said, 'Your doctor wants to see you immediately,'" Keri Young said. "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," Keri Young added. "The first 48 hours were very dark and very heavy and very testing."
Royce Young added that during this time they "kind of found out who we are."
Keri Young said they "made a pact that we were allowed to say whatever we wanted and you could not be judged for what you were going to say ... even if it's sad, even if it's angry, even if it's really bad ... you can say whatever you want to say. It's unhealthy to keep that inside."
Keri Young said she questioned the existence of God after learning of her daughter's condition. "There's no way God exists. There's no way ... there's just no way that this could happen ... we did everything right, you know?"
"We were supposed to have a healthy pregnancy, so why us?" Keri Young added.
Royce Young added that he even wondered, "She doesn't have a brain, so is she even a person?"
The Youngs' baby suffers from a medical condition known as anencephaly, which affects approximately one in 100,000 pregnancies.
Dr. Jennifer Smith, a doctor of maternal-fetal medicine at the Perinatal Center of Oklahoma, explained to ABC News that the part of the brain that the Youngs' baby is missing is essential to a human being's survival. "There is some brain stem tissue, and that is the part of the brain that controls breathing," Smith said. "But there is no superior portion of the brain. And that's the part of the brain that we all need to survive."
The Young family said that their daughter is growing, developing and kicking like a healthy baby. She even gets the hiccups. But without the brain cortex, doctors say she will not survive long after delivery.
Royce Young told ABC News that after he heard his daughter's prognosis, they asked the doctors what their options were.
"Our doctor at first kind of laid them out. You can induce early, and ... in effect, terminate the pregnancy. Or you can carry it on," Royce Young said.
Royce Young said they were torn about what they should do, and said that he and Keri Young did consider terminating the pregnancy.
"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," Royce Young said.
Ultimately, the couple decided to carry the baby to full term and donate her organs to save the lives of others. The couple will donate their daughter's organs to medical research and to families in need.
Royce Young said that the main thing they discussed was how painful it would be for them in the short term, especially every time they felt the baby kick or had people ask them whether they were having a boy or a girl.
"We had to kind of decide that, like, 'How are we going to feel about this when we're 50 years old?'" Royce Young said.
Keri Young added, "The whole time it was very much ... 'How can we limit regret? What will we regret the least?'"
Royce Young told ABC News that "We're going to focus on donating her organs and we're going to be her parents."
"There was freedom in that," Royce Young added of their decision. "I think that that kind of lifted a weight off of our shoulders. And that's when ... I think we did kind of start to feel happiness."
"For as long as she lives, 24 hours, 48 hours," Royce Young said. "We realized we're her momma and her daddy and we got to do ... we have got to do our job."
Keri Young said that the doctors told them their baby could survive "anywhere from five minutes to 36 hours."
Royce Young said, "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."
Keri Young said she has been enjoying the pregnancy so far.
"I'm now terrified of delivery," Keri Young said. "I don't want her to come out, you know."
"She's healthy right now, and I love feeling her kick, and that, that was surprising. It was. It was very surprising," Keri Young added. "She's as perfect as she's going to be right now. So I don't want to give that up.
"Now is not the time to be sad," Keri Young said. "I keep telling people we have a whole lifetime to be sad, after she's born and after she passes, then that's sad. But now, she's alive and she's kicked and ... for this pregnancy, that's the most joyful part."
Royce Young wrote in a Facebook post that garnered more than 53,000 reactions and over 22,000 shares that he is in awe at his wife, and said seeing her handle this is like "watching a superhero find her superpowers."
"I want to tell people how amazing my wife is because she's an amazing woman," Royce Young said. "But, also, my daughter has got a bigger purpose in life.
"This is my chance to tell everybody about her. I don't get to brag about how pretty her hair is, I won't get to ... tell people how good grades she made. I get to tell them about what she's doing with her life," Royce Young added.
Because her life could potentially save dozens of others, the couple decided to name their daughter Eva, meaning "life," in Hebrew.
"There's another family out there that's sitting there with their fingers crossed hoping that their, their baby's going to get a kidney," Royce Young said. "They're praying for a miracle themselves, but Eva can be that miracle.
"She's going to do more in her 24 hours or whatever than maybe we'll ever do in our lives," Royce Young said. "And to be able to remember our daughter in that way is pretty powerful."