NursingLink

Weeks After Surgery Denied, Teen Has New Liver

A Pinellas County teenager is recovering this week from a liver transplant just weeks after another hospital removed him from an organ waiting list, in part because of his status as a foster child. “I’m doing good, I just hurt a little,” the 15-year-old boy told his aunt this morning.

Agnes Nixon of St. Petersburg had cared for the teen since he was 13 months old but handed him to the state last year after his behavior issues grew too violent for her, she said Tuesday. She plans to travel next week to Jackson Memorial Hospital in Miami to see her nephew, who is recovering in intensive care after Sunday’s 10-hour surgery.

Florida’s Children First, an advocacy group in Coral Springs, rallied to support the boy last week after it became known that Shands Hospital in Gainesville had removed him from an organ donor waiting list, partly because he was in foster care.

“Shands could have asked more questions,” said the agency’s executive director, Andrea Moore.

“Shands drew some conclusions based on outdated information and perceptions about foster care.”

Department of Children & Families Regional Director Nick Cox said there were other concerns for Shands doctors, who have declined to comment specifically on the case.

Being a foster child didn’t help matters, he said. DCF has not identified the boy to protect his privacy.

Nixon, a 55-year-old retired receptionist, said that for years she drove her nephew to Shands three times a year for treatments and testing. He was diagnosed as an infant with biliary atresia, a rare liver disease that is the No. 1 cause for liver transplants in children in the United States.

He was on a waiting list at Shands for a couple of years before being removed, Nixon said

“They were really excited” about performing the surgery, she said. The hospital placed him back on the list but immediately dropped him, according to Nixon. “I have no idea why,” she said.

A Shands spokeswoman said the hospital was pleased to know the boy was doing well and that hospital officials wished him a full recovery.

Last week, a Shands surgeon said that with every patient the hospital evaluates, both the patient’s physical health and the person’s support and ability to comply with therapy and other care are considered.

One of the worst things that can happen is to perform a transplant with a high probability of an unsuccessful outcome, said LeAnne Jones, interim director of Shands’ abdominal transplant program.

Jackson Memorial transplant surgeon Andreas Tzakis said he couldn’t comment specifically on the boy’s surgery, but he said it would be very rare for Jackson Memorial to turn away a patient simply because there was no guaranteed after-care.

Hospital personnel would try to secure follow-up care or call the state. If both failed, they would look to an ethics panel for help making the decision on whether to perform the transplant.

“It is our job,” Tzakis said. “It is all of our jobs.”

When an organ becomes available, the hospital distributes it based on a national list, Tzakis said. Patients who are very ill take priority.

The boy, who is developmentally disabled, was born with a cleft lip, his aunt said. He had surgery as an infant, but his liver condition caused jaundice and bloated his stomach.

Eventually, he will be moved to a medical group home where he will live indefinitely, Nixon said. She hopes her brother’s son will be able to move back with her someday.

“You talk with him one time and you love him,” she said.

(c) YellowBrix 2008

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