Finley’s story: From frightening diagnosis to bright future

In the thick of his son Finley’s care, a hospital flier caught Cameron’s eye. It read, “Are you the grieving father of a medically complex child?” and invited dads to join a study.

Cameron sat down with the study leader the next day, with “fat tears rolling down his face” as he talked about his experience. The study leader asked, “If you could change one thing, what would it be?”

“I knew I couldn’t change Finley’s condition,” Cameron says. “But I wanted to do something to give back to Children's Health℠. I had the idea of pivoting my career to work there.”

Four years and an MBA later, Cameron is a proud Children’s Health employee, working on planning and construction for the new Children’s Health campus.

It all started when Cameron's wife, Jean, got a life-changing call when Finley was just 5-days-old.

A diagnosis causes panic on the weekend

The call was about Finley’s newborn health screening. He tested positive for a rare genetic disorder Jean and Cameron had never heard of: Maple Syrup Urine Disease (MSUD).

It was Labor Day weekend, and their pediatrician's office was closed.

“Naturally, we started asking Dr. Google,” Cameron says. “The first thing we saw is ‘left untreated, it can lead to brain damage or death.’ It was panic on the weekend.”

They rushed to their local emergency room. Finley’s health deteriorated to the point where he was life-flighted to a more specialized children’s hospital. But the roller coaster continued.

“It turned out that hospital was out-of-network for us, so we transferred his care to Children’s Health,” Jean says. “And we’re so grateful that’s where we ended up.”

Finley’s treatment options

When a child has MSUD, their body can’t break down certain amino acids (parts of proteins). Those amino acids can build up in the brain and lead to brain injury and even death. It’s called “maple syrup” urine disease because these amino acids can cause a child’s urine to smell like maple syrup.

One treatment option is a very strict diet that cuts out foods that have these amino acids. But so many foods contain them, including meat, dairy, cheese and some fruits and vegetables.

“This diet must be followed for life. Given how restrictive it is, it can be very difficult to follow,” says Luis Umaña, M.D., Pediatric Genetics and Metabolic Specialist at Children’s Health. “Even with strict dietary management, kids can experience metabolic decompensations when they get sick, even with a mild cold.”

Metabolic decompensations happen when the body’s chemical balance becomes unstable, often during illness. During these episodes, toxins can build up and put children at risk for developmental delays, brain damage or even death.

That’s what led Jean and Cameron to favor a different option: A liver transplant. A new liver enables the body to break down the amino acids it couldn’t before.

“A liver transplant can be life-changing for many kids with this condition,” says Amal Aqul, M.D., Medical Director of Hepatology and Medical Director of Liver Transplant at Children’s Health. “Most children who undergo liver transplantation for MSUD can tolerate a normal diet and are protected from the life-threatening metabolic decompensations.”

A transplant comes with its own complexities, including taking medicines to protect the new organ for the rest of your life.

“We were fully aware of the complexities of a transplant,” Jean says. “But through talking to the care team and doing our own research, we learned that even with the possible hiccups of transplant, adults who’ve had one and parents of kids who've had one would choose it every time.”

The original hospital where Finley received care recommended traveling to a program on the East Coast for a transplant. But his parents learned that they were already at one of the leading transplant centers in the country – at Children's Health. Dr. Aqul is a key player on the transplant team, which also includes transplant surgeons, metabolic specialists, dietitians, nurses and social workers.

"Our team has extensive experience caring for children with complex metabolic liver diseases, and we work closely together to support evaluation through long-term follow-up,” Dr. Aqul says.

Getting the call

A few months later, Jean received another life-changing call. It was Children’s Health saying come to the hospital right away. They likely had a liver for Finley.

After initial tests, the care team started preparing 16-month-old Finley for surgery.

“It was this roller coaster of emotions. Knowing that your toddler is going into major surgery, but that surgery would give him a chance at a more typical childhood,” Jean says. “And knowing that the organ came from a child close to Finley’s size – feeling so thankful for that family’s gift, while also knowing they had to say goodbye to their child.”

Finley went into surgery and his parents waited. They received an update sooner than expected.

Turns out the liver was such a good match that they didn’t have to reroute any veins. This meant the surgery was faster than expected. Just a few days later, Finley was on the up-and-up – and got to have a cookie for the very first time.

A care team that feels like family

Finley is now approaching his fifth birthday. He loves bugs, making new friends and reading. He wows his parents with his ability to read a picture book, close it and recite it back to them word for word.

Finley still comes to Children’s Health regularly for appointments and to make sure his new liver is working well.

“The partnership we build with families is very important because a transplant is not just surgery,” Dr. Aqul says. “It’s a long-term journey and we support patients and their families every step of the way.”

For Finley and his family, Kelsey Rogers, NCC, Clinical Therapist in the Solid Organ Transplant Program, is a crucial member of that support team.

“She’s really helped him start to understand that his medical care isn’t a punishment or something he did wrong, it’s what he needs to be healthy,” Jean says.

Child Life specialist Karoline Radka has also helped him understand why he needs medical care – and found ways to make receiving it a bit more fun.

"I remember when Caroline made a scavenger hunt with toy bugs at one of his appointments to help distract him from needle pokes,” Cameron says. “It's no wonder why Finley thinks of his doctors and nurses as 'cool aunties and uncles.’”

His parents are deeply grateful for their son's expert care and love every moment of watching him reach his potential.

“Finley – and many medically complex kids – have this incredible resilience because since day one, they’ve had to overcome things,” Cameron says. “Finley doesn’t let anything get him down. I try to be that way too. I can have no bad days when I look at him now and know what he’s been through.”

Learn more

The Pediatric Organ Transplant Program at Children’s Health offers expert and compassionate care. As one of the largest pediatric transplant programs in the country, we provide care that supports both patients and their families – and our outcomes consistently exceed national standards. Learn more about our program.