Parental Refusal of a Liver Transplant for a Child With Biliary Atresia

Pediatricians are required by law to notify child protection agencies if parents are neglecting their child’s medical needs. Sometimes, however, it is difficult to determine when a particular parental choice ought to be reported. If the treatment is standard therapy and the consequences of nontreatment are dire, than parental refusal is usually considered neglectful. Organ transplants, however, represent a unique situation for 2 reasons. First, because there is a dire scarcity of organs, there are more people who need organs than there are organs to transplant. In this situation, it seems odd to force a transplant on a child whose parents do not want it, knowing that other parents are eager to have their child undergo a transplant. Second, transplantation is risky and requires lifelong follow-up and treatment. Thus, parental cooperation is essential. We present a case of a child who needs a liver transplant and whose parents refuse, and ask 2 surgeons, a gastroenterologist, and a child abuse specialist to comment on the case. David C. Cronin is director of the liver transplant program at the Medical College of Wisconsin. Robert Squires is a gastroenterologist, George Mazariegos is a transplant surgeon, and Janet Squires is chief of the child advocacy center, all at the University of Pittsburgh.

A 10-month-old girl, Baby A, was admitted to the hospital because of worsening jaundice. She had been diagnosed with biliary atresia at 1 month of age, and a Kasai procedure was performed when she was 10 weeks old. Since then, she had been failing to thrive and had worsening jaundice.

On the current admission, the patient’s weight was 8 kg (<5th percentile). Her abdominal girth was 50 cm with significant hepatomegaly. Her total protein was 6.0 g/dL with an albumin level of 2.5 g/dL. Alkaline phosphatase was 355 U/L, aspartate aminotransferase was …

Address correspondence to John D. Lantos, MD, University of Missouri, Kansas City, 2401 Gillham Rd, Kansas City, MO 64108. E-mail: jlantos{at}cmh.edu