Keri and Royce Young found out their baby had fatal anencephaly when they went for an ultra-sound scan at 19 weeks / Keri Young/Facebook

'I've opened up to the thought of holding my daughter and watching her die. That's going to happen'

A pregnant mother and her husband are carrying their terminally ill baby to full term so her organs can be donated, saying their daughter is "going to do more in her 24 hours than maybe we'll ever do in our lives".

Keri and Royce Young, who have named their unborn baby Eva, went into hospital for a routine ultrasound scan 19 weeks into the pregnancy.

Doctors told them their baby had anencephaly, a rare and inevitably fatal condition where a child is born without a cerebrum and other parts of their brain and skull.

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'She has perfect feet and perfect hands. She has perfect kidneys, perfect lungs and a perfect liver. Sadly, she doesn't have a perfect brain' (Keri Young/Facebook)

The baby may live for anywhere from five minutes to a couple of days, but will never become aware of its surroundings. Rather than have an abortion, the couple decided Keri would bring Eva to term so her organs could be donated to society.

The Oklahoma couple appeared on Good Morning America this week, where Mrs Young said: "She's healthy right now, and I love feeling her kick, and that, that was surprising. 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. I keep telling people we have a whole lifetime to be sad...But now, she's alive and she's kicked and ... for this pregnancy, that's the most joyful part."

Mr Young, a journalist and sportscaster for ESPN, added: "There's another family out there...hoping that their baby's going to get a kidney. They're praying for a miracle themselves, but Eva can be that miracle."

In a Facebook post announcing the decision, Ms Young wrote: "Those first 24 hours were the hardest of our lives. I couldn't eat and when I finally did I didn't keep it down. We were exhausted but couldn't sleep and when we thought we had no tears left we cried and cried again."

Thoughts went through her mind, she wrote, from "There's no way God exists" to "We're going to spend all this money on prenatal care and labour and delivery and not take baby home."

But in consultation with their church pastor, who told them "in your daughter's 24 hours of life she might save 50 lives. She's going to be a very busy girl," the couple decided not to terminate the foetus. 

"I've opened up to the thought of holding my daughter and watching her die," Ms Young concluded. "That's going to happen. We will leave the hospital without a baby. That is our reality. But we accept it." 

The couple have since been keeping friends and well-wishers updated through social media. In another recent Facebook post, Mr Young sounded a similar note. He said: "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.

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"I want my daughter to be perfect. I want her to blow out her candles on her first birthday. I want to watch her bang her head on our coffee table trying to learn to walk.

"I want her to run up a cell phone bill texting boys. I want to walk her down an aisle. I want to change it all so, so badly. But I can't. This is our reality. And there's no stopping it."

According to the National Institute of Neurological Disorders and Strokes, a baby born with anencephaly is usually blind, deaf, unaware of its surroundings and unable to feel pain.

"Although some individuals with anencephaly may be born with a main brain stem, the lack of a functioning cerebrum permanently rules out the possibility of ever gaining awareness of their surroundings. Reflex actions such as breathing and responses to sound or touch may occur."

The baby is due on 7 May.

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