A US couple who decided to carry their baby to full term despite missing part of her brain have spoken out.
In an interview with Good Morning America, Royce and Keri Young say their daughter, Eva, has a higher purpose and will do more good in her short life "than maybe we'll ever do in our lives."
When Royce and Keri found out their daughter’s diagnosis they decided to carry her full-term and donate her organs.
In December, Royce and Keri attended their 19-week scan, excited to find out the sex of their baby.
Instead, doctors revealed Eva was missing the cortex of her brain, a medical condition known as anencephaly.
"The ultrasound tech came in and said, 'Your doctor wants to see you immediately,'" Keri told ABC News. "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 added. "The first 48 hours were very dark and very heavy and very testing."
Royce explained that doctors gave them choice to terminate the pregnancy or continue to full term.
Aware of how painful their decision is, especially as Eva grows, kicks and even gets the hiccups, the couple said now isn't the time to be sad.
"We had to kind of decide that, like, 'How are we going to feel about this when we're 50 years old?'" Royce said.
"We're going to focus on donating her organs and we're going to be her parents."
"There was freedom in that," he added. "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 realised we're her momma and her daddy and we got to do ... we have got to do our job."
Doctors say their baby could survive anywhere from five minutes to 36 hours.
"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."
The couple’s story originally made headlines in February after Royce penned a heartbreaking tribute to his wife on Facebook.
“I looked at her laying there, her belly big with our daughter kicking away, a daughter that won't live more than a few days, and it just overwhelmed me of how incredible this woman is.”
He added: “…Eva is alive and our daughter deserves to meet her mama and daddy, gave us a purpose to continue on.”