Biliary Atresia Clinical Care Program

About the Biliary Atresia Program

 The Biliary Atresia Clinical Care Program at The Children’s Hospital of Philadelphia had its informal, but very important beginning in the 1970s. Morio Kasai, MD, who devised and pioneered the Kasai operation, came to work with C. Everett Koop, MD, ScD, chair of pediatric surgery at CHOP (1948-1981) and surgeon general of the U.S. (1981-1989), and his surgical partner, Louise Schnaufer, MD.

From this early association, Dr. Schnaufer then took on the role of biliary atresia surgeon, and throughout her career performed more than 150 Kasai operations, establishing herself as a pediatric surgical leader in this area.

Dr. Schnaufer trained an entire generation of pediatric surgical fellows in the Kasai operation and continued as the Children's Hospital expert until her retirement. A pediatric surgical fellowship was later named in her honor. She was formally recognized at a Biliary Atresia Family Education Day a few years ago where she had the opportunity to meet with many young adults with biliary atresia who had directly benefited from her surgical expertise.

Since the 1980s, efforts in biliary atresia were also supported by Camillus L. Witzleben, MD, chairman of pathology, and John B. Watkins, chief of gastroenterology, who each had a specific interest in biliary atresia and biliary tract diseases.

Improving outcomes

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.

In 2002, the National Institutes of Health (NIH) asked for a request for proposals on projects related to biliary atresia, and Barbara Haber, MD, served as principal investigator for the Children's Hospital-based proposal.

The consortium of 10 biliary atresia centers was funded by the NIH, and was first known as the Biliary Atresia Research Consortium (BARC). The program has since expanded to 15 centers in North American and has been renamed the Childhood Liver Disease Research and Education Network (ChiLDREN). At Children’s Hospital, the hepatologists and surgeons are active participants in these research initiatives.

In addition, Pierre Russo, MD, serves as the chair of the pathology core for biliary atresia. Through the national network, Children's Hospital is able to share our expertise with leaders in medicine and science throughout the country. In turn, we gain from collaboration with other experts in the field. Because of these collaborations, biliary atresia patients who come to The Children's Hospital of Philadelphia have access to state-of-the-art care and experts.

Collaboration with transplant

Unfortunately, patients with biliary atresia often require liver transplantation. Therefore, our comprehensive Pediatric Liver Transplantation Program is an integral part of biliary atresia care.

Our program has excellent patient survival and graft survival statistics. Our transplant surgeons perform more than 120 liver transplants each year. The 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.

The hepatologists in the Division of Gastroenterology, Hepatology and Nutrition — along with more than 50 members of the Fred and Suzanne Biesecker Pediatric Liver Center — remain committed to giving the highest possible level of care for patients. We have active clinical and basic science research programs devoted to improving outcomes for these infants, children and young adults.

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Chris' Story

Read about Chris's experience with biliary atresia.