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1 LIVER CARE CENTER stlouischildrens.org

2 One of North America s Premier Pediatric Liver Care Centers The Liver Care Center at St. Louis Children s Hospital and Washington University School of Medicine is one of the country s leading centers in the care of children with all forms of liver disease. The Center s team of skilled liver specialists, surgeons, hepatologists, radiologists, nurses, social workers and other staff all play a vital role in coordinating the care of each child and managing the complexities of their liver disorder, with provision for expert consultation from other health professionals at St. Louis Children s Hospital such as geneticists, infectious disease specialists and psychologists. In addition to liver disease diagnosis and management, the Center s pediatric liver transplant program, with a team of highly experienced transplant surgeons, physicians, and nurses, has consistently achieved liver transplant success rates well above the national average, since its establishment in The collective experience of the transplant team includes hundreds of pediatric liver transplants some patients as young as 10 days old making it one of the most experienced liver centers in the country, attracting referrals from all over the United States. Our program produces outstanding results, and our staff excels at the service provided to our patients, their families and referring physicians. We have all of the tools to transplant children quickly, and are involved in pushing the frontiers of what lies ahead. Jeffrey A. Lowell, MD, FACS, surgical director, transplant program

3 Innovation and Expertise The Liver Care Center provides a comprehensive range of medical and surgical services for children with all types of liver disease, including biliary atresia, Allagille syndrome, alpha-1-antitrypsin deficiency, autoimmune hepatitis, viral and other forms of hepatitis, acute fulminant liver failure, liver tumors, cystic fibrosis and many other inherited and metabolic liver disorders. Surgical treatments include portoenterostomies (Kasai procedures for biliary atresia), liver resection and multiple liver transplant options, encompassing whole liver, segmented/reduced liver, split liver, living donor and combined liver-lung transplants. Washington University School of Medicine physicians at Children s Hospital have pioneered new developments and research into many areas of pediatric liver disease, including biliary atresia, liver regeneration, liver transplantation and surgical techniques that enable adult donor livers to be reduced in size for use in pediatric transplants. Staged organ transplants where a liver is transplanted first and then another organ (such as a kidney, heart or lung) is transplanted later also are performed, primarily to treat certain metabolic diseases involving several organ systems. In addition, the liver care team has aggressively evaluated and consistently uses the 2 The Liver Care Center team includes pediatric gastroenterologists, surgeons, radiologists, pathologists, nurse practitioners, nurse coordinators, social workers, psychologists and child life specialists.

4 latest minimal anti-rejection regimens to provide the best possible outcomes for transplant patients. St. Louis Children s Hospital is closely allied with neighboring Barnes- Jewish Hospital, a premier adult-care hospital also on the Washington University Medical Center Campus. This unique relationship offers the opportunity to optimize the number of organs or split organs available for pediatric transplant and reduces wait times for pediatric patients. Because of this, our program has one of the shortest wait times for liver transplant patients, averaging 3-4 months, whereas the national average exceeds one year. It also records an extremely high survival rate as compared to the national average, with 97 percent of all patients surviving three years post-transplant since Biliary Atresia Diagnosis and Disease Management St. Louis Children s Hospital also has a separate program within the Liver Care Center for the evaluation and treatment of biliary atresia, the most common cause of chronic liver disease in the newborn. This disease causes bile to build up within the liver from birth due to damage to the ducts necessary to remove bile from the body.

5 Split Liver Transplants: A single donor liver was split and successfully transplanted into a 5- month-old child at St. Louis Children s Hospital and a 47-year-old woman at adjacent Barnes-Jewish Hospital. Both patients are doing well 10 years later. One of the major factors in a newborn s outcome is the rapidity in which the liver gets damaged in the first few weeks of life hence early diagnosis is critical. For babies with biliary atresia, a timely diagnosis and careful disease management can vastly improve their outcome. Studies have concluded that if a specialized liver program receives a child with an early diagnosis, institutes treatment and a surgical procedure, proceeding seamlessly to transplantation if necessary, patients have a much better chance of long-term survival. The biliary atresia program is part of a nationwide multicenter network, and receives several million dollars in support annually from the National Institutes of Health as well as several private foundations for research on various liver diseases. St. Louis Children s Hospital also is designated as one of 10 leading pediatric clinical research centers and as a data coordinating center for the treatment of biliary atresia and neonatal hepatitis. The goals of these clinical research centers are to accelerate advances in the understanding, diagnosis and clinical management of biliary atresia and other rare, pediatric liver diseases. 4

6 St. Louis Children s Hospital s Liver Care Team treats a wide range of liver diseases, most notably: Acute Liver Failure Alpha-1 Antitrypsin Deficiency Biliary Atresia Alagille Syndrome Primary Familial Intrahepatic Cholestasis (PFIC) Chronic Hepatitis Primary Sclerosing Cholangitis Wilson s Disease Cystic Fibrosis Advanced Tyrosinemia Severe Biochemical Disorders (OTC deficiency, infantile Refsum s disease, Oxalosis) Liver Cancers - Hepatoblastoma - Hepatocellular Carcinoma - Embryonal Sarcoma Second Opinion Service The Liver Care Center also welcomes requests for a second opinion. A second opinion is an important resource for every patient. It can help answer your questions and confirm diagnosis and treatment options. To request a second opinion, please call

7 Leading-Edge Research St. Louis Children s Hospital s liver care expertise is known worldwide. The Center s physician-scientists regularly participate in several collaborative research efforts, including: Cholestatic Liver Disease Consortium (CLiC) - This group brings together physicians, nurses, researchers and patient support organizations in both the United States and the United Kingdom to research the causes and potential treatments for liver diseases. Studies of Pediatric Liver Transplantation (SPLIT) - This is a collaborative effort between transplant centers in the United States and Canada to optimize successful outcomes in pediatric liver transplantation. Biliary Atresia Research Consortium (BARC) - Based in the United States, this group coordinates research and best practices for the treatment of biliary atresia. Pediatric Acute Liver Failure Study (ALF) - A multicenter clinical trials group, ALF brings together 24 pediatric liver transplant programs and 26 adult programs to collaboratively research causes and therapies for the treatment of acute liver failure. 6 St. Louis Children s Hospital and Washington University physicians also have received multimillion dollar grants from the National Institutes of Health and other organizations to study acute liver failure, cystic fibrosis liver disease, liver infections following transplantation, and the mechanisms of liver regeneration.

8 Family-Centered Care Patients seeking a comprehensive evaluation for liver disease will find a caring and highly experienced staff at St. Louis Children s Hospital, many of whom have over 20 years experience in the treatment of liver disease and are pioneers in their field. Immediately following an initial diagnosis of liver disease, families can contact the Center for a full evaluation and discussion of treatment options. Digital imaging and laboratory tests as well as specialist consultations are part of the evaluation process. We transplant more patients with liver tumors than most centers. Our strong experience is directly related to the strength of the hospital s hematology/oncology program. Ross Shepherd, MD, FRCP, FRACP, medical director, pediatric liver transplant program

9 Appointments For an appointment, or to refer a patient urgently, call Families may call KIDS or our toll-free line at for information. More information about liver disease and the Liver Care Center is available on our Web site at stlouischildrens.org. To identify the best treatment protocols for children with liver disease, the Liver Care Team uses x-rays and abdominal ultrasound to examine the liver and gastrointestinal system. A liver biopsy and/or endoscopy exam may be performed. Other radiological tests could include CT and MRI digital imaging scans. Blood, urine, or stool samples also may be requested during the first visit and invasive procedures may be scheduled to further determine the extent of damage and appropriate course of treatment. Test results and treatment options are fully discussed with family members and the Liver Care Team sends a comprehensive report to the child s primary care physician. If surgical intervention or a transplant is necessary, the child will be placed in a dedicated hospital unit for liver patients. 8 Following surgery, the medical team works directly with the patient and family to establish optimal post-hospital care, including identifying medical, rehabilitation, and nutritional needs as well as any activity restrictions. Social workers and child life specialists are available as well to identify support resources for resumption of daily activities.

10 The Liver Care Center at St. Louis Children s Hospital Our mission is to provide comprehensive evaluation, treatment and care for children with all forms of liver disease, including those with end-stage or potentially fatal liver diseases requiring life-saving liver transplantation or other major surgical procedures such as liver resection, and to maximize potential outcomes and transplant donor organ sources. St. Louis Children s Hospital Patient Origin Washington Oregon Nevada Idaho Montana N. Dakota S. Dakota Wyoming Nebraska Utah Colorado Kansas Minnesota Wisconsin Iowa Illinois Missouri Michigan New York Ohio Pennsylvania Indiana NJ W. DE Virginia MD Kentucky Virginia VT NH MA CT RI ME California Arizona New Mexico Oklahoma Arkansas Mississippi Tennessee N. Carolina S. Carolina Georgia Alabama Texas Louisiana Florida

11 St. Louis Children s Hospital St. Louis Children s Hospital, located in the heart of mid-town St. Louis, is a nationally recognized hospital for the care of children from infancy through young adulthood. The hospital draws patients from across the United States and around the world. Founded in 1879, the hospital is ranked by Child magazine and U.S. News & World Report as one of the Top 10 pediatric facilities in the country. Physicians at the hospital are faculty members of Washington University School of Medicine. Ranked among the best medical schools in the country, Washington University s faculty excels in patient care, medical research and teaching. St. Louis Children's Hospital received the nation s highest honor for nursing excellence, the Magnet designation from the American Nurses Credentialing Center (ANCC). To date, only 170 of almost 5,000 hospitals nationwide 3 percent have Magnet status. The School of Medicine and St. Louis Children s Hospital are affiliated with the Alvin J. Siteman Cancer Center, a National Cancer Institutedesignated center for premier cancer research and treatment. St. Louis Children s Hospital also is a member of BJC HealthCare, the first fully integrated healthcare system in the country to join an academic medical center with suburban, rural and metropolitan-based healthcare facilities.

12 St. Louis Children s Hospital Liver Care Center One Children s Place St. Louis, Missouri (appointments) CS- 11/06 stlouischildrens.org

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