“We weren’t ready”: Dad shares the pain of losing his baby daughter

Posted in Birth.

When tiny Eva Young was born, her parents – Royce and Keri – knew their time with her would be brief. 

Content warning: This post discusses the loss of a baby

Devastating diagnosis

Their  little girl was diagnosed with a serious brain abnormality at 19 weeks gestation, and doctors advised her parents, Keri and Royce, that she would not survive.

“The options weren’t great. There was a) inducing early, which in effect was terminating the pregnancy or b) continuing the pregnancy to full-term,” Oklahoma City-based Royce explained.

Rather than terminating the pregnancy, Keri quickly realised Eva could make a real difference to the lives of others families. She decided to continue the pregnancy to full-term, spend any precious time they could with Eva and donate her organs and tissue, when she passed away. This way, their little girl could not only hold a special place in her family’s hearts, she could also live on in others.

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The story. Link in profile.

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Hello and goodbye

Royce and Keri shared some sad and beautiful photos of Eva after she was born, announcing they’d said “hello and goodbye” to their much-loved baby girl. 

“We said hello and goodbye to our sweet Eva yesterday. She was so perfect in her own little way,” Keri wrote alongside an image of herself, Royce and their son Harrison, snuggling with Eva after her birth.

It’s near impossible to fathom what this family have endured, as they’ve been forced to come to terms with Eva’s life and loss.

A dad’s story

Over the weekend, her dad Royce shared more of their story, writing and publishing an emotional post on blogging platform, Medium.

“Our daughter was diagnosed with a rare birth defect called anencephaly. Some three in 10,000 pregnancies rare. Congratulations to us. The phrase our doctor used in explaining it was “incompatible with life,” which looks as terrible in words as it sounds. The child fails to develop the frontal lobe of the brain, or the top of their skull,” Royce wrote.

Despite Eva’s brain abnormality, her brain stem was still intact, meaning she moved about just like any other baby.

Challenging pregnancy 

Royce said the challenges of the progressing pregnancy came thick and fast.

“She started having contractions at 34 weeks, and we worried about early labor. Eva needed to be five pounds, or as close as possible to it, to be eligible for organ donation for transplant,” Royce explained.

“At 36 weeks pregnant, Keri’s belly was measuring at 42 weeks because of all the extra fluid inside, a complication standard with an anencephalic pregnancy called polyhydramnios.”

But tiny Eva brought unexpected rewards too.

“What we unexpectedly found, though, was joy in the pregnancy. We happily talked about our sweet Eva, and day by day our love for her grew. We got excited to be her parents. I think a big part of that was connected to the decision we made to continue on, which was empowering. She had a name, an identity, and a purpose.”

“This is going to be bad, isn’t it?”

At 37 weeks, Eva’s arrival was suddenly, urgently imminent.

“Keri didn’t feel Eva move much that morning, but we both brushed it off and went to lunch. We came home, put Harrison down for a nap, and Keri sat down in her favorite spot and prodded Eva to move. She wouldn’t.”

Keri tried to spark some movement in her baby, but nothing seemed to work. The couple decided it was time to go to hospital.

“‘This is going to be bad, isn’t it?’ I said. Keri erupted into tears and her body shook. I had my answer.”

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Come at me #beautyandthebeast

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“I freaked out”

On arrival, nursing staff were unable to find a heartbeat, but thought perhaps it was due to the excess fluid. They admitted Keri and events began to unfold very quickly. Despite months of preparation, the couple were swept along with the medical momentum, feeling suddenly, terribly unprepared. And who could blame them?

“They brought in a bedside ultrasound machine and looked. It seemed that maybe there was a flicker of cardiac activity. They told us to get ready to rush in for a c-section. I freaked out. I just remember repeating, “I’m not ready I’m not ready I’m not ready I’m not ready.” I was supposed to have two more weeks. What about the plan?”

A second ultrasound revealed that events had taken an unexpected turn. 

“There was no heartbeat. Eva was gone before we ever got to meet her. The brain controls steady heart functions, and Eva’s finally gave out,” Royce wrote.

“What a total rip-off”

After their heroic decision and a difficult pregnancy, Eva passed away in-utero and her organs could not be donated.

“Keri rolled onto her side and put both hands over her face and let out one of those raw, visceral sobbing bursts. I stood silently shaking my head. We had tried to do everything right, tried to think of others, tried to take every possible step to make this work, and it didn’t. No organ donation. Not even for the failsafe, research. We felt cheated. What a total rip-off. The word I still have circling in my head is disappointment. That doesn’t really do it justice, because it’s profound disappointment. Like the kind that’s going to haunt me forever.”

“Since there was no reason to control variables anymore, the doctors induced Keri into labor. The rest of Sunday and into Monday morning were the darkest, most painful hours of our lives,” the grieving dad explained.

“The rug was pulled out”

After finding some meaning in their baby’s terminal diagnosis, the couple were faced with a fresh wave of trauma. It sounds unbearable and seems so deeply unfair.

“Not that grief needs to be ranked, but compared to even when we found out Eva’s diagnosis, this was so much worse,” Royce wrote. “We had come to terms with the outcome, and had almost found a joy in the purpose of our daughter’s life.”

“We knew we’d hurt from her loss, but there was a hope in the difference she was making. We heard from recipients of organ donation that were so encouraging and uplifting. But the deal got altered. The rug was pulled out from underneath us. This was a curveball we couldn’t accept.”

“And on top of it all, the ultimate kick in the gut: We wouldn’t even see her alive… I clung to knowing her humanity would be validated to me when I saw her as a living, breathing human being. I would hold my daughter and be her daddy.”

Making a difference

The family say that despite the ongoing heartbreak they’re enduring, they’re bolstered by the awareness Eva’s life has drawn to the importance of organ and tissue donation. 

“We’re thrilled with the impact she’s made. People from around the world have sent us messages telling us they’ve signed up to be organ donors, because of Eva.”

While Eva’s organs sadly could not be used to save other lives, her eyes were able to be donated. Royce said they are her “living legacy”.

“I keep thinking about looking into them some day, but more than anything, about her eyes seeing her mom, dad and brother. I can’t ever hold my daughter again. I can’t ever talk to her or hear her giggle. But I can dream about looking into her eyes for the first time one day, and finding out what color they are.”

Our deepest condolences to this wonderful family.

You can find out more about organ and tissue donation at Donate Life.


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