BY CAROL MARBIN MILLER
A disabled foster child whose quest for a life-saving liver transplant was rejected by a Central Florida hospital because he has no stable home is expected to arrive in Miami Wednesday to begin testing with Jackson Memorial Hospital's organ-transplant team.
Administrators with the Department of Children & Families got word Tuesday morning that the 15-year-old boy from Pinellas County had been cleared by doctors at Jackson to be evaluated for a new liver. The boy, who suffers from mental retardation, still must be approved by the organ team before he is listed on a national database to wait for a liver.
"f I have to, I'll drive him myself," Nick Cox, DCF's top administrator in the Tampa Bay area, said Tuesday. "They have not only cleared him, they have scheduled time for him to come down [Wednesday] to get tested."
On Tuesday, administrators of Pinellas' private foster care agency, Eckerd Community Alternatives, arranged for the boy to be driven to Miami along with staff members who will care for him during testing, said Marcie Biddleman, the agency's vice president.
Eckerd administrators also have located a home where they think the boy can live while he recovers from the transplant, if Jackson agrees to perform the surgery, Biddleman said. "Our primary focus today was to get this child down there," she said. "We've beem pretty busy today trying to make sure he's OK."
Cox said the boy had been removed from a waiting list for available livers by doctors at Shands Hospital in Gainesville. The doctors said the boy was a poor candidate for an organ transplant because child welfare workers could not ensure he would remain in a permanent, stable home during recovery.
The staff at Shands Hospital declined to discuss the boy's case Tuesday.
"We take the role of transplant center very seriously," said LeAnne Jones, interim director of Shands' abdominal transplant program. "We are committed to making compassionate and responsible decisions about our patients, and the management of the life-saving resource of donated organs.
"We truly believe the worst thing you can do is perform an organ transplant on a patient who has a high probability of an unsuccessful outcome," Jones added. ``Doing so not only puts that patient at risk of death, but another patient on the wait list is denied a chance for a successful outcome and can also die.''
Jackson also declined to discuss the youth's case, citing privacy laws. Spokeswoman Lorraine Nelson said in a statement that "any patient in need of a transplant will be evaluated. This does not mean that the hospital has accepted the patient or that the patient will receive a transplant."
Kenneth Goodman, who heads the University of Miami's bioethics program, said he was not aware of any other case in which a foster child was rejected for a donor organ because he lacked the stability necessary for post-surgical recovery. It is well accepted among medical ethicists, he said, that people with disabilities are entitled to the same medical treatment, including transplants, as the nondisabled.
Arthur Caplan, chairman of the medical ethics department at the University of Pennsylvania's medical school, said in cases such as this, it's the state's duty to ensure the boy is provided the stability he needs to accept and protect his new liver.
`THE EXTRA MILE'
"I think it's their job to get him to an environment where he's not asked to die because his parents haven't gotten him into a stable environment," Caplan said. Shands' decision, he said, "makes no sense at all to me, ethically. You've got to go the extra mile with kids and get them into an environment where the transplant can work."
Children's advocates also directed their anger Tuesday at the state Agency for Persons with Disabilities, which has declined to accept the boy into a program that offers services to disabled people who live outside large institutions.
Spokeswoman Melanie Etters said the agency will do everything it can to ensure the teen receives proper medical care. ''We are working as part of a team of state agencies to make sure the young man gets all his needs met,'' she said. ``We are going to work to make sure he has a successful recovery and transition back into the community.''
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