Taking Strides Against Pediatric Liver Disease

In October, more than 400 runners, walkers and supporters came out for the eighth annual Colleen’s BA 5K, a 3.1-mile race that runs along scenic and leafy Rock Creek Park in Kensington, Maryland. Colleen’s family started the event in 2014 in memory of their empathetic, hardworking and positive daughter, who was diagnosed as an infant with biliary atresia (BA), a rare liver disease, and who died in 2013 at the age of 19 after waiting almost four years for a second liver transplant.

Since she was 4 months old, Colleen, who was attending the University of Michigan to become an occupational therapist, was a patient of Kathleen Schwarz, the long-time medical director of pediatric liver transplantation at the Johns Hopkins Pediatric Liver Center. Colleen received her first liver transplant at 7 months old, with her mother, Kate Mitchel, donating a portion of her liver for the procedure.

“The staff at the Children’s Center are a part of your family day in and day out for so many years,” says Mitchel, adding that Colleen, who also battled lymphoma, had 15 surgeries and 41 hospital admissions at Johns Hopkins during her lifetime. “But I felt so strongly about supporting them because of Dr. Schwarz. She was so driven to figure out what the cause of this disease is, and I wanted to support her mission.”  

Through the Colleen Mitchel Memorial Fund (which also supports organ donation programs in the Washington, D.C., area), the Mitchels have donated $165,000 raised from Colleen’s BA 5K to the Johns Hopkins Pediatric Liver Center to support research aimed at discovering the root cause of BA, as well as improving treatment for children who are living with liver disease.

The Johns Hopkins Pediatric Liver Center provides care for symptoms, disorders and diseases of the liver, pancreas and gallbladder. The liver transplant program has been performing pediatric liver transplants since 1987 and living donor transplants since 1992.

This year, the program welcomed a new medical director of pediatric liver transplantation, Sara Kathryn Smith. Schwarz, now professor of pediatrics emerita, has moved to California, where she can continue to practice medicine while being closer to family.

Smith is continuing the foundation of excellence established in pediatric liver transplant under Schwarz’s tenure while growing the department to the next level.

“We’re working on expanding the reach of the program, increasing the number of transplants and putting us on the map nationally as a transplant center,” says Smith, who is also an assistant professor of pediatrics. “When people think about places to bring their kids for pediatric liver transplants, we want Hopkins to be on their list.”   

In only 10 months, Smith and the transplant team are close to reaching one of their goals. The department performed eight pediatric liver transplants between January and October, and is on track to reach 12–14 transplants by December, which would be a record for the liver center.  

Biliary atresia — a condition in which bile ducts outside or inside the liver are blocked, causing bile to build up in the liver, potentially causing damage or leading to death if left untreated — is the number one reason why children need pediatric liver transplants. As a donor, Mitchel wants to help discover why biliary atresia develops in children.

“Hopkins has an amazing reputation,” adds Mitchel. “I really want them to figure out what causes this disease so they can work on a cure.”