When Chris Burrier was born, all was well. He had all his fingers and toes, was a healthy weight, and scored well on his newborn screening tests. He and his family went home from the hospital with a bright, normal future ahead of them.
“It was a completely normal pregnancy – there were no issues,” said his mother, Becky. “It was a completely normal delivery.”
When he was about two months old, his parents noticed he was a bit jaundiced. His doctor also noticed, and said the words no parent wants to hear: “That’s not right.”
It took a while – and several consultations with specialists – to find out what was wrong with Chris. The diagnosis? Biliary atresia, a rare condition in newborns where bile flow from the liver to the gallbladder is blocked. The bile gets trapped in the liver, leading to liver damage and eventually liver failure.
So, Becky and Mike Burrier’s nine week old son underwent a liver biopsy, agonizing tests and medical procedures, and normal was no more. Now, they had a new normal: Raising a child who would one day need a liver transplant.
Now, 13 years later, that day has come.
“This is the beginning of the road to a transplant,” said Becky.
The Burrier family now waits for Chris to be officially put on the adult liver transplant list. While the family completes the last bit of paperwork needed, they make their way through a complicated world where worse is better when it comes to receiving a life-saving surgery. The worse Chris feels, and the more complications he encounters, the better his score, which determines his place on the list.
The wait begins
In the meantime, Becky Burrier has become her child’s champion.
“You can get a little crazy, and I did. I’ve gotten better as I’ve gotten older, but those first few years were a little crazy,” she said. “I had a notebook for the first seven or eight years where I took his temperature at the same time every day. I look at it now and think the doctors must have thought I was a maniac.”
A raised temperature, however, can often indicate something is not right for Chris. The family is careful not to expose him to more germs than necessary, and they always get their flu shots and other immunizations on time. He is considered immune compromised, and even minor infections hit him hard.
Still, normal was always the goal. While in elementary school, Chris felt better and ran cross country and played basketball. He learned how to ride a bike without training wheels, something that was potentially dangerous because his body is slow to heal from bruises.
“The doctor said we had to let him be a child. I remember asking the doctor if it was okay to let him go to a sleepover,” said Becky, with a disbelieving laugh. “If we were in the hospital on a school day, we still did homework. If he was in pain it didn’t justify bad behavior and you have to still use your manners. You have to maintain your expectations.”
Eventually, he had to stop basketball and cross country. After missing a lot of school – 37 days alone in 5th grade – he is now enrolled in an online charter school. The dozens of procedures and countless blood draws over the years created anxiety issues that he sees a counselor for.
Everyone is affected
Chris bears the brunt of his illness – he suffers from jaundice, an enlarged spleen, portal hypertension and chronic fatigue. But it also affects the rest of his family, including his sister Sydney, age 11, who is also enrolled in an online charter school.
“We’ve always tried really hard to make time for Sydney. She gets left behind a lot for doctor appointments,” said Becky. “Even if I was tired, if she had a volleyball game I went. You just get up and go.
“It’s hard to manage, and we’re definitely not perfect at it,” she added. “That’s part of the reason we kept her in the online charter school – we can have more day to day contact with her, and she has the freedom to come and stay with us when we do get the transplant.”
The transplant itself will challenge the family. Even with insurance, it is expected to cost at least $40,000 out of pocket to cover hotel and travel, some doctor bills and some medications. When the call comes they will have to be at the Cleveland Clinic within three hours – and the Clinic will send an airplane if necessary.
It could take nearly a year to get the call. Chris can expect to stay in the hospital for up to 10 days. He and his mother must stay in Cleveland for at least the first month for daily checkups in the transplant clinic. It could be up to three months before they can come home. And he will be on anti-rejection medications every 12 hours for the rest of his life.
Various local fundraisers have been held to help with transplant costs. The family also has a donation site set up through the Children’s Organ Transplant Association, which administers a fund for transplant families.
For more information, visit cota.donorpages.com/PatientOnlineDonation/COTAforChrisB/ or email fundraising chairman Kurt Heminger at kurtheminger@Findlayoh.com.
Even after all this, his new liver will only last about 12 years before he needs another transplant.
“His transplant is not a cure,” said Becky. “It’s a chance – a chance at life that he doesn’t have now.”