A BRAVE couple who made the incredible decision to carry their terminally ill baby to full term so they could donate her organs have said goodbye to their “sweet Eva”.
Keri Young and her husband Royce learned their baby girl was terminally ill just 20 weeks into the pregnancy with their second child.
They were offered a termination but they bravely chose to carry her to full term, knowing she would die, so they could donate her organs in the hope it would save the lives of other babies.
On Tuesday Keri, from Oklahoma in the USA, shared a bittersweet Instagram photo of her family saying goodbye to “sweet Eva”.
She wrote: “We said hello and goodbye to our sweet Eva yesterday.
“She was so perfect in her own little way. I’ll be sharing more about her incredible story later.”
The couple were over the moon to discover they were expecting their second child.
But it was short-lived.
At their 20-week scan doctors told the couple their unborn baby girl, who they named Eva, had no chance of living beyond a few days.
They diagnosed her with anencephaly – a condition that means a portion of her brain and skull are missing.
Incredibly, with a further 20 weeks until her due date, brave Keri made the decision to carry her to term.
A decision her husband described as like “watching a superhero find her superpowers”, that momentarily lifted him out of the devastation.
At the time, heartbroken Royce paid tribute to his awe-inspiring wife in a Facebook post detailing her decision to donate their little girl’s organs.
He wrote: “The other night I was watching my beautiful wife sleep peacefully on the couch.
“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.
For the next 20 weeks I will feel her kick, have the hiccups and we’ll be able to hear her perfect heart beating all while knowing we’ll only get a few short hours with her when she’s born.
Keri Young
“I thought back to the moment where we found out Eva wasn’t perfect, and how literally 30 seconds after our doctor told us our baby doesn’t have a brain, somehow through full body ugly crying, Keri looked up and asked, ‘If I carry her full term, can we donate her organs?’
“I remember our doctor putting her hand on Keri’s shoulder and saying, ‘Oh honey, that’s so brave of you to say’.
“Like, how nice of you, but come on. Keri meant it.
“There I was, crestfallen and heartbroken, but I momentarily got lifted out of the moment and just stood in awe of her.
“I was a spectator to my own life, watching a superhero find her superpowers.
“In literally the worst moment of her life, finding out her baby was going to die, it took her less than a minute to think of someone else and how her selflessness could help.
“It’s one of the most powerful things I’ve ever experienced.
“In the eight years we’ve been married (and 15 years together) I’ve had a lot of moments stop me in my tracks where I thought, ‘holy crap this woman I’m married to, lucky me.’
“But this one was different.
“It hit me that not only am I married to my very best friend, but to a truly remarkable, special human being.”
He went on to describe how his wife is experiencing every moment of being pregnant, with the knowledge that her darkest hours are yet to come.
He said: “This whole process has been rough, but I say that as someone watching from the bleachers like the rest of you.
“Keri has been in the trenches the entire time, feeling every little kick, every hiccup and every roll.
“She’s reminded every moment of every day that she’s carrying a baby that will die.
“Her back hurts. Her feet are sore. She’s got all the super fun pregnant stuff going on.
“But the light at the end of her nine-month tunnel will turn into a darkness she’s never felt before a couple hours or days after Eva is born.
There’s another family out there hurting and hoping for a miracle for their baby, knowing full well someone else’s baby will need to die first. Eva can be that miracle.
Royce Young
“She’s the one that is going to deal with all that comes with having a baby, her milk coming in and the recovery process but with no snuggly, soft, beautiful newborn to look at to remind you that it was all worth it.”
According to the US Center for Disease Control and Prevention anencephaly is serious birth defect in which a baby is born without parts of the brain and skull. It is a type of neural tube defect.
It is so rare it affects three in every 10,000 pregnancies in the United States.
Explaining their decision to donate baby Eva’s organs, Royce explained that it has given them purpose.
He wrote: “Donating was on Keri’s mind from darn near the second we found out and while the experience of holding and kissing our daughter will be something we cherish forever, the gift(s) she’s got inside that little body of hers is what really matters.
“Keri saw that almost instantly.
“There’s another family out there hurting and hoping for a miracle for their baby, knowing full well someone else’s baby will need to die first. Eva can be that miracle.
“We’re getting closer to the finish line, and while it’s going to be amazing to run through that tape and meet Eva, it comes at a cost.
“We’ll go to the hospital for a birth, and go home without a baby.
“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 want to change it all so, so badly. But I can’t. This is our reality. And there’s no stopping it.
Royce Young
“I would definitely change this if I could. 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.”
ORGAN DONATION
Organ donation is giving an organ or tissue to help someone who needs a transplant.
Transplants can save or greatly enhance the lives of other people.
But this relies on donors and their families agreeing to donate their organ or tissue.
There are two types of organ donations; when a person is living and when a person has died.
In death, most organs can be donated.
While a donor is still living, they can choose to donate a kidney, a small section of their liver, discarded bone from a hip or knee replacement and also their amniotic membrane.
Doctors can only use organs and tissues from a registered donor with the families consent after they die.
So if you are a donor, make sure you have discussed your wishes with family and friends.
To register to donate your organs visit organdonation.nhs.uk
Just months before, when the couple found out about their daughter’s devastating fate, Keri posted a picture of her scan captioned: “This is our daughter’s perfect heart. 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.
“For the next 20 weeks I will feel her kick, have the hiccups and we’ll be able to hear her perfect heart beating all while knowing we’ll only get a few short hours with her when she’s born.
“We’re choosing to try and see the positives in this situation and cherish our time with Eva, and be grateful for the impact she will have on the world in the short amount of time she’ll spend in it.”
Then, after a follow up with doctors, they confirmed baby Eva’s organs would be able to be donated.
Keri explained: “At this point I knew what we had to do, I just didn’t want to do it.
“The reality of feeling her kick for 20 weeks was very much settling in.
“Strangers excitedly asking me about my stomach and friends not knowing how to treat us was devastating to think about.”
In England the organ donation system is “opt in”, meaning people have to make clear their intention to donate their organs, and parents those of their kids.
Across the border in Wales the system is “opt out”, where people rather have to speak out if they do not want to be a donor.
A transplant can save a person’s life or improve their health and quality of life.
There are two types of donations, living and deceased.
If you are interested in becoming an organ donor visit the NHS Organ Donation Register.
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