Keri and Royce Young are expecting their second child but they’ll never get to watch her take her first steps, say her first words or even hear her laughter.
WORDS CHRISTEL GERALYN GOMES
On the 17 of February this year, husband and soon-to-be father Royce Young watched his pregnant wife Keri, sleeping peacefully on the couch. He then took out his computer and wrote a Facebook post that quickly went viral.
The post was long, and in it, Royce wrote about how when doctors broke the news that the baby in Keri’s belly was growing without a brain, Keri decided, without giving it a second thought, despite desperate grief and heavy sobbing, that she would carry it to term in order to donate the baby’s organs.
He wrote about how in awe he was at the woman who, in his words, “in literally the worst moment of her life, finding out her baby was going to die, took her less than a minute to think of someone else and how her selflessness could help.”
Growing Without a Brain: Anencephaly
Anencephaly is a rare birth defect in which the baby is born without parts of the brain and skull. “The top of her skull and brain are missing. She has a brain stem and part of her cerebellum, which is what allows her to move and kick, but her frontal lobe is not there. It's pretty rare; I believe something like 1 in 10,000 pregnancies experience anencephaly, but it's something like 1 in 100,000 live births,” says Royce.
When the baby was diagnosed as having the condition, Royce and Keri’s doctors used the words "incompatible with life”, to describe it. They found out about the condition at a routine 19-week ultrasound. “The ultrasound technician told us we needed to go see our doctor immediately. At that point, we knew something was very wrong. It was a stressful 20 minutes or so between getting from the ultrasound place and our doctor's office. But once we were told about what was going on, obviously our first reaction was to just completely melt.”
Royce further recalls the moment of finding out baby Eva had the condition, “Literally thirty seconds after our doctor told us our baby doesn't have a brain, somehow through full body, ugly crying, Keri looked up and asked, ‘If I carry her full term, can we donate her organs?’ I remember our doctor putting her hand on Keri's shoulder and saying, ‘Oh honey, that's so brave of you to say.’ Like, how nice of you, but come on. Keri meant it. 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.”
The doctors, of course, didn’t have any personal advice for the couple, who now had to make an intensely personal decision, but Royce explained that they did tell the couple that they effectively had two options: one, to induce early or terminate or, two, continue the pregnancy.
“Of course, we had plenty of questions about what most people do, about Keri's health, about future pregnancies, etcetera. The doctors were great about giving us all the information they had,” said Royce.
Pregnancy to Term
In describing the experience of pregnancy, knowing full well that the baby won’t live past a few hours or days, Royce writes, “This whole process has been rough, but I say that as someone watching from the bleachers like the rest of you. Keri has been in the trenches the entire time, feeling every little kick, every hiccup and every roll. She's reminded every moment of every day that she's carrying a baby that will die. Her back hurts. Her feet are sore. She's got all the super fun pregnant stuff going on. But the light at the end of her nine-month tunnel will turn into a darkness she's never felt before, a couple of hours or days after Eva is born. She's the one that is going to deal with all that comes with having a baby – her milk coming in, the recovery process, etc, but with no snuggly, soft, beautiful newborn to look at to remind you that it was all worth it.”
Carrying a baby who has anencephaly to term in many ways, feels like any other pregnancy would. However, one difference is that Eva can't swallow amniotic fluid, which is what babies normally do. This has caused Keri's belly to swell up, making it much bigger than with a normal pregnancy. “At 34 weeks, Keri is measuring at full term. That's been a challenge because those last couple weeks of a full-term pregnancy are tough. Keri's been dealing with that full term feeling for almost a month now and has another month and a half to go,” Royce explains.
Inspired Strength and Joy
Despite all of it, Keri tells Royce that "Now is not the time to be sad." Royce shares that Eva is kicking and alive and that is something they celebrate together. “Keri and I aren't really sad people, and we both see the hope in this story. There are plenty of dark days and sad times, but we know our outcome, and there's some peace in that. We've had time to come to grips with what's going to happen, and find a lot of joy in thinking about Eva's life providing the gift of it to someone else's baby. We don't spend our day crying into a pillow. We laugh, we act silly, we play with our son Harrison. We're still living our lives because while this event is a defining moment, we're not letting it define how we live.”
When asked if they have an idea of what to expect once Eva is born, Royce says that his wife has managed to get in touch with another mum who went through the same in 2013, “She's been wonderful in helping understand what's ahead. We're hoping that it's a joyful thing and not a sad thing. It's hard to know what to expect. Keri says, "I don't think we can know how we're going to feel until we actually feel it."
The Need for Infant Organ Donation
In Singapore – and in many other parts of the world – the prospects for a child or infant that needs an organ transplant is often bleak, with few organ donations from children and infants, for a variety of reasons, cultural ones among them. For these children, not finding a suitable donor is often a death sentence.
Keri and Royce, more than most, understand this. “I think the main message we think is important is that life is a precious, fragile thing that should be celebrated. Whatever your personal politics are, life isn't something to be taken for granted. As Eva's parents, she has the ability to give it to other people, and it would be irresponsible and selfish of us to not let her do that. It means we have to deal with some extra heartache, but we want to teach our son to help others, even complete strangers, and this is our opportunity to do that ourselves.”