My wife Keri and I went in for the standard 19 -week anatomy scan of our second child. As a mother, you think that appointment is all about finding out boy or girl, but it’s about a whole lot more.
In our suit, our daughter was diagnosed with a rare birth defect called anencephaly — some 3 in 10, 000 pregnancies rare. The phrase our doctor used in explaining it was “incompatible with life, ” which appears 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 0 %. We sat in a doctor’s office, five months before our daughter was to be born, knowing she would die.
The alternatives weren’t great. There was( a) inducing early, which in effect was discontinuing the pregnancy or( b) continuing the pregnancy to full term.
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 intellect, but we left the doctor and still expended the next 48 hours choosing what we were going to do. It was excruciating. We held discontinuing. We had to. Were we capable of taking on the weight of the 20 weeks ahead? In our intellects, 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 we chose the name Eva for our girl, which entails “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 determined ending point. We met with an organ procurement organization called LifeShare of Oklahoma and found out we’d be the eighth family in the country to donate the organs of an infant.
There wasn’t much of a precedent or process in place because, until only recently, most parents of anencephalic newborns didn’t know it was an option. There’s this weird grey 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 perhaps 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 the physical pregnancy and the mental onu of carrying a newborn for 20 more weeks knowing she would die. The kicks and punches to Keri’s bladder served as a constant reminder of what was inside.( Yes, Eva kicked like any other newborn; 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 detected, though, was exhilaration in the pregnancy. We merrily “was talkin about a” our sweet Eva, and day by day, our love for her grew. We get excited to be her mothers.
I believe a big part of that was connected to the decision we made to continue on, which is now being empowering. She had a name, an identity, and special purposes. The idea of selection in pregnancy is a complicated one, and one I kind of want to avoid here. Wherever you fall, just know, “were in” empowered by our decision, our responsibility to be Eva’s mom and dad for as long as we could. We went from considering the pregnancy as a vehicle to help others to looking forward to holding her, kissing her, telling her about her brother, and being her mothers.
The time we’d have was completely unknown, with it ranging anywhere from five seconds to five minutes to five hours to, in some most optimistic calculates, five days.
We decided to have a planned c-section. We wanted to maximize our chances of ensure Eva alive and be able to control as many variables as is practicable.
There wouldn’t be any astound labor in the middle of the night. We could have our first child Harrison there to gratify his sister and grandparents ready to hold their granddaughter even if she was only alive for an hour or so. We wanted to do what was best for our girl. That’s what parents do.
As the date neared, the meetings and appointments cranked up. We had what everyone called the “Big Meeting, ” a meet at Baptist Hospital of about 30 people 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 the latter are developing a protocol on the fly. There were schemes and contingency plans and contingency plans for the contingency plans.
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 schemes that were 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 graft, they would go to research, and infant organ research is incredibly valuable.
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 couldn’t dream about what my daughter would grow up to be, so I fantasize about certain differences she could build.
What if the person who got her kidneys became chairperson? What if her liver went to a little boy and he goes on to win the Heisman Trophy? I was writing the “3 0 for 30 ” script in my intellect every night as I went to sleep. It was something to hold onto; it was the various kinds of hope I wrapped up with both limbs. Research was nothing more than a fail-safe to me, a Scheme B that I didn’t want any part of.
There were some concerns from the hospital’s ethics team about Eva and our plans. As I explained to them — and to anyone else out there who has this idea that we grew a daughter just for her organs — Eva was a terminal child. And as her parents, we elected to construct her an organ donor. That’s it. She would be born, live an indefinite quantity of period, and then “were in” choosing to donate her organs.
Then suddenly, we were in the two-week window. In two weeks, we’d be prepping to welcome our newborn daughter 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 18 th 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 sleep, and Keri sat down in her favorite spot and prodded Eva to move. She wouldn’t.
We started to worry. Keri got up, strolled around, drank cold water, eat some sugary stuff. She sat back up and awaited. Maybe that was something? We decided to go to the hospital. We held on to hope that we were just being too anxious and didn’t take any containers.
We arrived, and a nurse looked for a heartbeat on the doppler: nothing. Not unusual; it was sometimes hard to find because of the extra fluid. They brought in a bedside ultrasound machine and seemed. 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 just recollect recurring, “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 scheme? 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?
They brought in a better ultrasound machine. Keri and I had insured 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 on one of those raw, visceral sobbing explosions. I stood mutely 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 gift. Not even for research, our fail-safe. We felt cheated.
The word I still have circling in my head is disappointment. That doesn’t really do it justice because it’s profound frustration. The kind of disappointment that they are able 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. We had previously come to terms with the outcome and had almost detected a pleasure in the purpose of our daughter’s life. We had looked forward to meeting her and loving her. We knew we’d hurt from her loss, but there was hope in the difference she was stimulating. We had heard from recipients of organ donation that were so encouraging and uplifting.
But the deal got altered. It felt like we were letting everyone down.( I know how ridiculous that sounds .) I felt disconcerted because all that positivity about saving lives wasn’t happening now.( I know how ridiculous that voices .)
On top of it all, the ultimate kick in the gut: We wouldn’t even find her alive. I fought with the idea of Eva’s existence and her humanity all along, about whether a terminal diagnosis attained her dead already. I clung to knowing her humanity would be validated to me when I ensure her as a living, exhaling human being. I wanted to watch her succumb because that would mean I got to watch her live. I longed for just five minutes with her — heck, five seconds with her. All of that practical stuff about organ gift was irrelevant to me now. I just wanted to hold my newborn girl and assure her chest move up and down. I just wanted to be her daddy, if merely for a few seconds.
Eva came amazingly quick on Monday. Keri forced me to go get some lunch — a sad, lonely lunch featuring me taking bites of chicken thumbs in between sobbing — and I got back to the hospital around midday. 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.
At 12:20 we called our family and told them to hasten.
At 12:30, our physician, 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 guess I have some good news for you.”
Keri and I held one another and cried as the nurses cleaned Eva, and Dr. Pinard called LifeShare for us.
Then, she strolled up to the foot of the bed.
“I’m on the phone with LifeShare, ” Dr. Pinard said, a smile cracking through on her face. “They have a recipient for Eva’s eyes.”
It’s weird to say that during 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 schemed or hoped for, but it was everything we needed in that moment. I interred my head in my limbs and sobbed harder than I ever have. Keri set her hands over her face and did the same. Happy tears.
As the nurses handed her to us for the first time, much of the dread and anxiety was lifted from us and replaced with hope and pleasure again. Here comes Eva Grace Young, the superhero she was always meant to be .
None of it ran as we planned. We’re trying to rest on knowing we did the best we could. We always said we wanted to limit our unhappines, and I think in 20 years or so, as we reflect on this, there’s not much we’d change.
We’re proud to be Eva’s parents. We’re thrilled with potential impacts she’s built. People from around the world have sent us messages telling us they’ve signed up to be organ donors because of Eva.
Eva’s the first ever — not newborn, but person — in the state of Oklahoma to donate a whole eye, and she donated two.
Because of her, LifeShare has stimulated connections in other states to set up eye grafts for the future. They have an infant organ donation scheme they now are working with sharing with other organ procurement the organisations of Colorado and Texas. They call it the Eva Protocol.
I keep thinking about looking into her eyes some day, but more than anything, I think about her eyes seeing her mama, daddy, and brother.
We always wondered things about Eva, like what colouring her hair would be, if she’d have Harrison’s nose, if she’d have dimples like her mama, or what colouring her eyes would be. In the time we spent with her, one eye was just a little bit open, and I opposed 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 colour they are.
This story first appeared on the author’s Medium and is reprinted here with permission .
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