lundi 1 mai 2017
Dad of Terminal Baby Carried to Donate Organs Speaks Out About Her Death
We said hello and goodbye to our sweet Eva Grace yesterday.
Eva Grace Young -- 4-17-17
Posted by Royce Young on Tuesday, April 18, 2017
Royce and Keri Young knew that their baby girl Eva was going to die when Keri was just 19 weeks pregnant, as Eva was diagnosed with a rare birth defect called anencephaly. The diagnosis was fatal, but the couple made a decision to carry Eva to term in order to donate her organs, a decision that made the family go viral. Now, weeks after saying hello and goodbye to Eva, Royce is candidly speaking out about his daughter's death, because even though he knew it was coming, nothing went as expected.
In an essay posted to Medium titled, "We spent months bracing and preparing for the death of our daughter. But guess what? We weren't ready," Royce delves into the unexpected joy he and Keri found 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. The idea of choice in pregnancy is a complicated one, and one I kind of want to avoid here, but our own personal convictions were pushed to the limits. Keri likes to say, "You think you know, but you have no idea." Until you put the shoes on and start walking the road, you don't have any clue. But wherever you fall, we just know that we were empowered by our decision, our responsibility, to be Eva's mom and dad for as long as we could. We are thankful to have had made the decision on our own terms, rather than a rule book telling us we had to. We went from seeing the pregnancy as a vehicle to only help others, to looking forward to holding her, and kissing her, and telling her about her brother, and being her parents. The time we'd have was completely unknown, with it ranging anywhere from five seconds to five minutes to five hours, to in some more optimistic estimates, five days.
Leading up to Keri's May 2 C-section date, the Youngs had meeting after meeting with doctors, the people from the organ procurement organization, LifeShare, NICU nurses, and other hospital personnel. They made plans of action for every possible outcome, still facing the crushing fact that their girl was going to die. "We had to make concessions with the transplant doctor, things like agreeing to intubate Eva shortly after delivery," he wrote. "But we were willing, because regardless of our parental instincts to want to love and hold her for as long as we could, we also very clearly understood the inevitable. There was no changing the fact she would die."
Despite all of their planning for the best possible outcome, on April 16 and at 37 weeks, Keri knew something was wrong with Eva when she wasn't moving around as usual. "We started to worry. Keri got up, walked around, drank cold water, ate some sugary stuff. She sat back down and waited. Maybe that was something? We decided to go to the hospital," Royce wrote. "'This is going to be bad, isn't it?' I said. Keri erupted into tears and her body shook. I had my answer."
Feeling completely unprepared, the couple went to the hospital only to confirm their biggest fear via ultrasound: Eva was gone.
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. . . .
Not that grief needs to be ranked, but compared to even when we found out Eva's diagnosis, this was so much worse. We had come to terms with the outcome, and had almost found a joy in the purpose of our daughter's life. We looked forward to meeting her and loving her. She was making an impact already, and people from around the world were celebrating her. 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. It felt like we were letting everyone down (I know how ridiculous that sounds). I felt embarrassed because all that positivity about saving lives wasn't happening now (I know how ridiculous that sounds). All the meticulous planning and procedures, all out the window. I'm telling you, just . . . disappointment.
And on top of it all, the ultimate kick in the gut: We wouldn't even see her alive. I struggled with the idea of Eva's existence and her humanity all along, whether a terminal diagnosis made her dead already. 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. I wanted to watch her die, because that would mean that I got to watch her live. Think about that one for a second. Now it was all gone. I longed for just five minutes with her, heck, five seconds with her. All of that practical stuff about organ donation was irrelevant to me now. I just wanted to hold my baby girl and see her chest move up and down. I just wanted to be her daddy, if only for a few seconds.
Keri was induced and the couple somberly waited for Eva's arrival along with their birth photographer. Then Royce received a text from LifeShare with more unexpected news: they had a recipient for Eva's eyes. "It's a weird thing to say that in probably the worst experience of my life was also maybe the best moment of my life, but I think it was the best moment of my life. The timing of it all is just something I can't explain," Royce said. "It wasn't what we planned or hoped for, but it was everything we needed in that moment. I buried my head in my arms and sobbed harder than I ever have. Keri put her hands over her face and did the same. Happy tears."
Royce ends his soul-crushing story with an uplifting note about his daughter's legacy, despite nothing involving her birth or death going as originally planned.
We're trying to rest on knowing we did the best we could. We always said we wanted to limit our regret, and I think in 20 years or so as we reflect on this, there's not much we'd change. Because anything we would change was already outside of our control anyway. We're proud to be Eva's parents. 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. She's the first ever - not baby, but person - in the state of Oklahoma to donate a whole eye, and she donated two. Because of her, LifeShare has made connections in other states to set up eye transplants for the future. They have an infant organ donation plan they now are working with that they'd shared with other organ procurement organizations in Colorado and Texas. They call it the Eva Protocol. It's laminated and everything. . . .
We always knew organ transplant was only just a chance anyway, and a slim one at that. But we wanted to take it. Someone's life is worth the chance. In some ways, though, I'm more excited about her eyes being 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.
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