The Centers for Disease Control and Prevention estimate that every year three out of 10,000 pregnancies have a baby with anencephaly. The serious birth defect means a baby will be born without parts of the brain and skull. The exact reason why anencephaly happens is not fully known. Nonetheless, scientists believe a change in the baby’s genes or chromosomes is a factor as well as medicines the mother consumes, and low intake of folic acid. The CDC said that most babies born with anencephaly die shortly after birth.The tears captured in the photos were bittersweet. The couple got to meet their baby girl but had to say goodbye to her almost immediately.
The couple were given the option to terminate the pregnancy or go full term knowing their baby would die. They chose the latter.
They wanted to donate Eva Grace’s organs
“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,” Royce continues. “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.”
They said knowing that Eva was alive and they were going to meet her if only for a little bit “gave us a purpose to continue on.”
“We decided to continue, and chose the name Eva for our girl, which means ‘giver of life,'” Royce writes. “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.”
“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,” he reveals. “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.”
That doesn’t mean the emotional pain of knowing what was to come was made easier.
“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)” Royce explains.
“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,” he writes. “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.”
“She feared people asking what she was having, or the due date, or if the nursery was ready,” Royce says of the emotional pain.
“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,” Royce acknowledges.
“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,” Royce continues.
“We wanted to maximize our chances of seeing Eva alive, and be able to control as many variables as possible,” he writes.
“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,” Royce explains. “It was something Keri had to grieve as well, giving up a vaginal birth for our next child.”
Keri was told she needed to have an immediate C-section.
The couple rushed to the hospital where they were told there was no heartbeat.
“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,” Royce writes.
Royce says he “had latched on to kidney or liver donation, grasping to the thought Eva would directly save a life.”
“I wanted to watch her die, because that would mean that I got to watch her live. Think about that one for a second,” he says.
Doctor Pinard made the call on behalf of the distraught parents while the nurses were cleaning the baby.
“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,” he admits.
He writes that Keri put her hands over her face and wept happy tears. This is what they needed at that moment he says.
LifeShare is using this opportunity to get other states on board to set up eye transplants.
Royce admits he doesn’t know what his daughter’s eye colour is. “In the time we spent with her, one was always just a little bit open, and I fought the temptation to peek,” he admits. “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.”