About the Biliary Atresia Clinical Care Program

The Biliary Atresia Clinical Care Program at Children's Hospital of Philadelphia (CHOP) has one of the largest populations of biliary atresia patients in the United States. This program is part of the Fred and Suzanne Biesecker Pediatric Liver Center, which is internationally recognized for its expertise in research and care.

A diagnosis of biliary atresia often occurs after an infant who had seemed to be perfectly healthy develops jaundice. The diagnosis can be overwhelming for families. Our team of caregivers are dedicated to providing state-of-the-art care at a critical and sensitive time. Education about what to do and what to expect starts at the time you first meet us.

In the U.S. there are only 250-400 new cases of biliary atresia each year. Although biliary atresia is rare, its geographic reach is wide. Families from across the nation and around the world come to us because of our reputation as one of the premier specialty centers for biliary atresia. 

A team approach

Our gastroenterologists, hepatologists, nutritionists and surgeons communicate and work together to provide care. For infants, the team's goal is to have the baby in surgery, if appropriate, soon after first contact with our team.

Our surgeons are among the most experienced in the Kasai procedure, the treatment for biliary atresia. The skill and experience of the surgeon performing this complex procedure is a very important factor in outcomes.

As your child grows, our team will continue careful monitoring and specialized care. Even with careful management, half of all children with biliary atresia will require liver transplantation by age 2.

The Pediatric Liver Transplantation Program at CHOP is an integral part of biliary atresia care. Our transplant surgeons perform between 10 to 24 liver transplants each year and the program has excellent patient survival and graft survival statistics. This program is led by Surgical Director Kim Olthoff, MD, and Medical Director Elizabeth Rand, MD, along with transplant surgeons Abraham Shaked, MD, PhD, and Peter L. Abt, MD.

A long history 

CHOP has a long history of caring for biliary atresia. In the 1970s, Morio Kasai, MD, who devised the Kasai operation as a treatment for biliary atresia, came to work at CHOP, under C. Everett Koop, MD, ScD — the former chair of pediatric surgery at CHOP (1948-1981) and the former surgeon general of the U.S. (1981-1989) — and his surgical partner, Louise Schnaufer, MD. Dr. Schnaufer then took on the role of biliary atresia surgeon, and throughout her career performed more than 150 Kasai operations. She was  a pediatric surgical leader in this area and trained many pediatric surgical fellows in the Kasai operation.

A research leader 

In 2001, the Fred and Suzanne Biesecker Pediatric Liver Center was founded with the mission to develop a world-class pediatric liver center focused on improving treatment and outcomes of children with biliary atresia. The center has drawn together experts in molecular biology, immunology, genetics, pathology, surgery and pediatric hepatology in order to develop a comprehensive program of science and clinical care devoted to pediatric liver disease.