What It's Like Growing Up on an Organ-Transplant Waitlist
"When I was eight months old doctors gave me a few months to live. Then I was put on the organ-waiting list."
When I was a kid my eyes were yellow, my skin was jaundiced, my teeth were gross, and I always, always, had a bloated stomach. I could see my body was different from the other kids' at school. I couldn't run around; I was always too weak or tired. I would just sit and watch them play.
I was born with biliary atresia. Basically the small ducts in my liver that are supposed to ship out the corrosive bile didn't work. It just stayed in there, slowly destroying me from within. When I was eight months old doctors gave me a few months to survive. Then I was put on the organ waiting list.
My family expected a phone call for a replacement liver in a few months or a year—perhaps two at the most. But the call never came. While we waited, I became familiar with hospitals. My bones were so brittle I'd break an arm just playing in the yard. Whenever anyone had a cold or a bug, I was absolutely guaranteed to catch it. I'd catch things no one else was sick with. I'd have some obscure virus and miss weeks of school, staying at home vomiting instead. The times I was sick were scary because if a liver became available doctors wouldn't give it to me.
The hospital used to hold these weird picnics for the kids with organ problems. We'd gather in one of the hospital parks and play with other sick children and their healthy families. The families all came to know one another. It was nice of the doctors, they were great to us, but it was strange for me. Even when I was young it felt like something was wrong. I only went a few times, then stopped.
Every time a phone rang we'd think it was a liver for me. My dad used to have a pager, and when the battery was low it would beep. He'd have to call the hospital to see if they'd called us, but it was never them.
The phone rang at 2 AM on the night before my first day back at school for third grade (I was eight). My parents told me later they knew straightaway it was for me. They woke me up and brought me to the kitchen, where my brother and sister were already waiting. The doctors had said, "You have to come in right now. You have a good chance tonight, we might be able to match you up."
Whenever an organ becomes available, you have an hour to get to the hospital. We rushed there like it was the end of the world. Even then, there was no guarantee I'd get the liver. Doctors sometimes call more than one possible candidate for an organ. They call each patient in, work you up, and decide who will be the best fit. Your convenience is never a factor in a situation like this—the best anatomy wins. The other kids just have to go home.
Lucky for me this wasn't the case. I was the one chosen for the liver. We barely had time to celebrate, because in less than half an hour I had to go straight into surgery. While this was huge news, I only vaguely understood it.
The transplant lasted 16 hours. My parents said they saw the liver brought in, stored in one of those little blue foam Esky coolers—the ones just big enough for a six-pack of beer.
When I woke up, I had a big, fresh L-shaped scar across my stomach. My memories of the weeks that followed are pretty hazy. The first clear thought I had was of hunger. I called out to my parents for food, gargling past the tubes stuck down my throat.
When I was first properly conscious, my mother held a mirror up for me. I saw for the first time a pair of white eyes staring back. My skin didn't look so pale and sick; instead it was flushed and healthy with the new rich blood beneath it. My stomach wasn't bloated either—it had gone down. All within 24 hours.
I spent two weeks in ICU, followed by a month in an isolation ward. Doctors advised I could go home in isolation, which meant I had to wear a mask for 12 weeks. No one but my parents or my brother and sister could come in for the entire school term. But other than that, the story onwards is pretty positive. My body accepted the liver and the rest is history.
I don't really talk about the transplant much. It's not like it makes me upset, but I just never look to bring it up—there's no reason to. I like being ordinary. For as long as I can remember, kids have given me the nice treatment . Teachers and parents would say that I was the "sick one." Everyone was forced to be extra kind to me, writing me cards and giving me presents. It was considerate, but I didn't like it. People don't realize you don't want to be singled out; you just want to be like everyone else.
When I think about it, it's upsetting to know someone died to give me my liver. The doctors never tell you where the organ comes from, but you can assume another child has died, and it was sudden enough for their liver to survive. You never have contact with the family of the donor. All we were allowed was to send one letter to thank them, to tell them what it meant for me.
I suppose if I had to say there's any point to this story, it's that not enough people donate their organs. As unsettling as the death of a person is, I'm only alive today because someone said it was OK for me to have their liver. I think most people just don't think of registering as a donor. So if you haven't, and want to, go do it.
Sometimes I ask Mom about what would have happened if I hadn't received the liver when I did. She said that after a few more months I would have died.
I was lucky.
Following Charlotte's recovery, her family started a charity supporting the families of kids undergoing liver transplant at the Royal Children's Hospital. If you'd like more information on that, visit Yellow Ribbon Kids.
As told to Jack Callil. Follow him on Twitter.