Having a baby is such a miraculous event. What would you do if you found out your baby was terminal and would most likely die within minutes or hours? What if your baby could save the lives of other little ones in need of healthy organs? Take a few minutes to read the story of Eva Grace who was born with a terminal condition called anencephaly. Her parents had a plan for her birth and organ donation, but things never seem to quite go as planned.
We spent months bracing and preparing for the death of our daughter. But guess what? We weren’t ready.
Written by: Royce Young on www.medium.com
So here’s the backstory: In December, my wife Keri and I went in for the standard 19-week anatomy scan of our second child. As a parent, you think that appointment is all about finding out boy or girl, but it’s about a whole lot more. In our case, 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. The chance of survival is literal zero percent. If you’re Googling it now — first of all, don’t click images — and see a story about a baby that has lived a lengthy time with anencephaly, either the baby doesn’t actually have anencephaly, or it’s being kept alive with every life support function possible. So we sat in a doctor’s office, five months before our daughter was set to be born, knowing she would die.
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. Maybe you heard our story already, but within a minute or so of finding out, Keri asked if we could donate the baby’s organs if we went to full-term. It was on her heart and mind, but we left the doctor and still spent the next 48 hours deciding what we were going to do. It was excruciating. We considered terminating. We had to. Were we capable of taking on the weight of the 20 weeks ahead? In our minds, we were intentionally taking on the loss of a child, rather than the loss of a pregnancy. And yes, there is a difference.
We decided to continue, and chose the name Eva for our girl, which means “giver of life.” The mission was simple: Get Eva to full-term, welcome her into this world to die, and let her give the gift of life to some other hurting family. It was a practical approach, with an objective for an already settled ending point. We met with an organ procurement organization called LifeShare of Oklahoma and found out we’d be the eighth family to donate the organs of an infant in the state. There wasn’t much of a precedent or process in place, because until only recently, most parents of anencephalic babies didn’t know it was an option. Heck, our maternal fetal medicine doctor, who specializes in cases like ours, didn’t even know. You see, there’s this weird gray area involved because even without a brain, these babies can’t be declared brain dead. Her heart would need to stop beating, leaving a finite window of, let’s call it opportunity, to recover her kidneys, liver and maybe pancreas and heart valves. We asked about other things, like her eyes or corneas, but LifeShare told us they’d never done that before, even with an adult.
Part of the difficulty of the decision to carry on was in the physical pregnancy, and the mental burden of carrying a baby for 20 more weeks knowing she would die. The kicks and punches to Keri’s bladder serving as a constant reminder of what was inside. (By the way, yes, Eva kicked like any other baby; her brainstem was complete, which is what controls basic motor functions. I know, we had a hard time wrapping our minds around it, too.) She feared people asking what she was having, or the due date, or if the nursery was ready.
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. 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.
We met often with LifeShare and our doctors. We saw 4D ultrasounds of our girl, and took Harrison to see her. The first one, he said, “That’s my sister! I have a sister!” My nose burned and eyes filled up with the watery stuff. Especially when I realized that eventually he’d be saying, “I had a sister.” We decided to have a planned C-Section, on May 2, even though Harrison was born vaginally. We wanted to maximize our chances of seeing Eva alive, and be able to control as many variables as possible. That way there wouldn’t be any surprise labor in the middle of the night, and we could have Harrison there to meet his sister, and grandparents ready to hold their granddaughter even if she was only alive for an hour or so. It was something Keri had to grieve as well, giving up a vaginal birth for our next child. But it was necessary, and we wanted to do what was best for our girl. Because that’s what parents do.
As May 2 neared, the meetings and appointments cranked up. We had what everyone was calling “The Big Meeting,” a gathering of about 30 people at Baptist Hospital that included multiple people from LifeShare, NICU nurses and doctors, neonatologists, and other Very Important Hospital People. We were the first infant organ donor ever at Baptist, and they were developing a protocol on the fly. There was a laminated sheet and everything. It included three different outcomes: 1) Eva is born and stable; 2) Eva is born and not stable and 3) Eva is stillborn. There were plans and contingency plans, and contingency plans for the contingency plans.
We had to make concessions with the transplant doctor, things like agreeing to intubate Eva shortly after delivery. 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. And we didn’t want to let five extra minutes with us get in the way of what could be a lifetime for someone else. The process was going to be delicate, and to be frank, it seemed increasingly unlikely that it would work. There were a lot of things that were going to need to go just right, even with the intricate plan that was being put in place. It was made clear to us over and over and over again how if Eva’s kidneys or liver didn’t go directly for transplant, they would go to research, and infant organ research is incredibly valuable. I got that. It made sense. But I wanted a tangible outcome. I wanted to be able to meet and hug and shake the hand of the person my daughter saved. I had dreams of going to birthday parties and high schools graduations and weddings. It was all pie in the sky stuff, but I couldn’t dream about what my daughter would grow up to be, so I fantasized about the difference she could make. What if the person who got her kidneys became president? What if her liver goes to a little boy and he wins the Heisman trophy? I was writing the “30 for 30” script in my mind every night as I went to sleep. It was something to hold on to, it was the kind of hope I wrapped up with both arms. Research was nothing more than a failsafe to me, a Plan B that I didn’t want any part of.
There were some concerns from the hospital’s ethics team about Eva and our plans. But as I explained to them, and to anyone else out there that has this idea that we grew a daughter just to be killed for her organs, Eva was a terminal child. And as her parents, we elected to make her an organ donor. That’s it. She would be born, live an indefinite amount of time, and then we choose to donate her organs because she was under the age of 18. As Russell Westbrook would say, don’t get it twisted.
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. 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. Keri chugged water like a crazy person, went in for weekly non-stress tests, and we closely monitored Eva. The doctors suggested moving the C-Section to 37 weeks, but we pushed back on that, knowing there was no way she’d be five pounds then. We were trying to do everything we possibly could to give us the best possible chance. That’s all we could do.
On Sunday, April 16, the day Keri officially hit full-term at 37 weeks, suddenly, we were in the two-week window. In two weeks, we’d be prepping to welcome our baby girl into the world, and preparing to say goodbye to her. I planned on sitting down that day to write Eva a letter, like I did before Harrison was born, to give him on his 18th birthday. She’d never read it, but I was going to read it to her. 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.
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.
“This is going to be bad, isn’t it?” I said.
Keri erupted into tears and her body shook. I had my answer.
We held on to hope that we were just being overly anxious, and didn’t take any bags. We arrived, and a nurse looked for a heartbeat on the doppler. Nothing. Not unusual because it was sometimes hard to find because of the extra fluid. 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? What about Harrison? What about Eva’s aunts and uncles and grandparents? What if they couldn’t make it in time? What about her letter? What about the laminated sheet?
They brought in a better ultrasound machine. Keri and I had seen enough ultrasounds to immediately know. 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.
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. The kind of disappointment that is going to sneak up on me at different times, like when I’m mowing the yard or rocking Harrison or driving to a game.
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. 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.
Eva came surprisingly quick on Monday. Keri forced me to go get some lunch — a sad, lonely lunch featuring me taking bites of chicken fingers in between sobs — and I got back to the hospital around noon. Keri sat up and felt some pain. Then she felt another shot of pain ring through her body. Our photographer had just arrived and was setting up. Keri started to panic, and asked for nurses to come in. They checked her, and it was time to have a baby. I still wasn’t ready.
We wanted our wonderful doctor to be there, Dr. Pinard, so Keri basically was going to hold Eva in until she was. At 12:20 we called our family and told them to hurry. At 12:30, Dr. Pinard arrived. At 12:33 and 12:35, Laurie from LifeShare tried calling Keri. At 12:37, Eva Grace Young was born. I cut her umbilical cord at 12:38. My phone rang at 12:40 and 12:41, and then a text came. It was Laurie from LifeShare.
“Hey Royce, it’s Laurie — will you give me a call when you get a chance? I think I have some good news for you.”
Desperate, I immediately started to call, but Dr. Pinard said she would. Keri and I held each other and cried as the nurses cleaned Eva up. Dr. Pinard walked up to the foot of the bed.
“I’m on the phone with LifeShare,” she said, a smile cracking through on her face. “They have 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. 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.
A few feet away the nurses finished cleaning Eva up and wrapped her, putting the hat Keri had knitted on her head. As they handed her to us for the first time, much of the dread and fear was lifted off us, and replaced with some hope and joy again. Here comes Eva Grace Young, the superhero she was always meant to be.
None of it went as we 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.
I had latched on to kidney or liver donation, grasping to the thought Eva would directly save a life. She’s not saving one like I dreamed of, but she will be changing one. 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.
We always wondered things about Eva, like what color her hair would be, if she’d have Harrison’s nose, if she’d have dimples like her mama, or what color those eyes would be. In the time we spent with her, one was always just a little bit open, and I fought the temptation to peek. 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.