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Foster Child Denied Shot at New Liver

July 8, 2008

By Carol Marbin Miller, The Miami Herald

Jul. 8–A disabled foster child whose liver is failing has been removed from a Central Florida hospital’s organ-transplant waiting list because hospital administrators fear the state’s shaky child-welfare system cannot ensure he has a permanent home in which to recover.

Shands Hospital in Gainesville removed the boy, 15, from a waiting list for organ recipients after administrators determined the boy’s unstable living conditions make him a poor candidate for a transplant, said Nick Cox, the Department of Children & Families regional administrator in the Tampa Bay area, where the boy lives.

The state’s next move: appeal to Miami’s Jackson Memorial Hospital, which DCF officials hope will put the teen on its transplant wait list.

Shands administrators told DCF chiefs they had serious concerns that the boy might not be in a safe, permanent home for the two years necessary to ensure his body does not reject the new liver, Cox said. The hospital, he said, “had a big concern about post-placement permanency.”

The teen, who is not being named by The Miami Herald to protect his privacy, is in the advanced stages of liver disease, and doctors say he will need a new liver.

Child welfare bosses contacted doctors at JMH in an effort to place the teen on a wait list there, and the boy cleared his first hurdle when JMH doctors reviewed his medical records and agreed he is in need of a new liver, Cox said.

“Jackson has given me hope,” Cox said late Monday. “We think Jackson could be the angel for this child. We are holding our breath that they will be able to clear him” for the surgery.

Kim Jamerson, a spokeswoman for Shands, declined to discuss the boy’s case, saying the hospital did not have enough time late Monday to reach doctors who were involved with his care.

A spokeswoman for JMH said she was unable to get information on the case Monday night.

Although all hospitals that perform transplants have to abide by the same national standards and protocols on choosing recipients, doctors and hospitals can disagree about how to interpret the criteria in particular cases, experts on transplants say.

The boy has had a difficult life, even for a foster child.

Removed from his mother at infancy because she could not kick a crack cocaine habit, the teen had been living with relatives under DCF supervision until about a year ago, when his relatives were unable to continue caring for him. Since then, he has been in foster care in the Tampa Bay area.

He has been diagnosed with a developmental disability and often has difficulty controlling his behavior. DCF tried to arrange for him to live in a medical foster home in Gainesville so he could be near the hospital during the lengthy recovery process, but child-welfare workers were unable to find a specially trained home that would accept him.

DCF caseworkers are also trying to get the boy services from the state Agency for Persons with Disabilities, Cox said, but APD rejected his application because the agency has a waiting list with more than 15,000 Floridians seeking care.

“This child has spent his entire life in a struggle,” Cox said. “And the system doesn’t always help him. This is one of his ultimate struggles.”

Cox said the state expects to hear from JMH shortly. If the hospital agrees to put him on the transplant wait list, DCF will have to fly him to Miami, where he will stay at the Ronald McDonald House near the hospital for a battery of medical tests over two or three days.

Jackson also must ensure the boy is able to pay for the costly procedure, said Cox, who added that finances should not be an impediment since the boy, as a foster child, is insured through the state’s Medicaid program.

If JMH approves the teen, he could go on Jackson’s liver transplant list quickly. “We are hoping and praying they will do that,” Cox said.

Kenneth Goodman, who heads the University of Miami’s bioethics program, said the state should be able to ensure that the child is in a stable enough environment to receive care after the transplant. “When it comes to children, there are ways to ensure adequate post-operative treatment,” he said. “In the case of children with special needs, it requires a special effort. Can we find anyone who will say in public that children with disabilities are not worth that effort?”

Arthur Caplan, chairman of the medical ethics department at the University of Pennsylvania’s medical school, said he could think of few, if any, reasons to deny a disabled foster child a transplant organ — such as if a child’s disability rendered him suicidal, or completely incapable of accepting care.

Caplan said it is unreasonable to require the state to guarantee the boy will be in a permanent home for at least two years, given that even children who are not in foster care can’t make such guarantees. “That is a bar a little too high,” Caplan said.

Transplant teams routinely accept pledges from recovering alcoholics that they will never drink again after accepting a donated liver, or promises that smokers will quit smoking once they receive a new heart, Caplan said. Why should a foster child be required to do more than that? he asked.

“It is absolutely unethical to deny a transplant to a child because you don’t have a home setting that is stable or parents who can help with compliance with the treatment,” Caplan said. “That’s why you have child-caring agencies and foster care. That’s what child welfare should be doing.”

“This kid should be listed,” Caplan said.

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Copyright (c) 2008, The Miami Herald

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