A Sick Boy Says "Enough!"

(2 of 2)

Eventually the side effects, which are poorly understood, proved too much. An avid reader, Benny found he could not scan a book for more than five minutes without a blinding headache. The pain in his joints often kept him from playing with friends. Last year, after thinking about it all summer, he decided to cut back on his dosage. His mother and the rest of his family protested, but by October Benny had stopped taking any medicine at all. And for half a year he lived what he has called "the best months of my life."

Nevertheless, in the view of transplant experts, Benny had made a mistake. In some cases transplant patients can be weaned from their antirejection drugs, but it must be done under close medical supervision so doctors can intervene at the earliest sign of trouble. If Benny had bided his time, say doctors, he might have had a happier relationship with the transplanted organ. "The longer you have an organ, particularly the liver, the more it becomes a part of you, and you a part of it," says Dr. Andrew Klein, a liver- transplant specialist at Johns Hopkins Medical School. Transplant surgeons admit they are among the most aggressive at trying to keep death at bay. "Considering the severe shortage of donor organs, I think there is a moral obligation to take care of the organ you receive as best you can," says Klein. He allows, though, that preserving an organ should not take precedence over preserving some semblance of pleasure in life.

One suspects that in Benny's case, patient and doctors failed to understand one another's priorities. Perhaps the boy felt his pain was not being taken seriously enough. Perhaps the medical team misread the young man's growing determination to choose his own fate. "Often when problems like this arise, there's a miasma of suspicion about families and how trustworthy they are," says James Nelson, a medical ethicist at the Hastings Center in New York. Someone from the Pittsburgh team decided to call the child-abuse hot line in Florida to try to force Benny to renew treatment, and the result was the awkward standoff. "That's the most distressing part to us," says Tzakis. "We all have the feeling that Benny has slipped out from under us."

Tzakis has not given up hope that Benny may still change his mind. Several transplant recipients have volunteered to talk to the boy. But after a week spent dealing with lawyers and turning away phone calls from Nightline, People and other national media, Benny seemed weary. "Just tell them," he said, "I want to be left alone."