NJ parents: Disabled girl was denied transplant

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“Most adults can’t donate an organ, because it won’t fit” a child, Caplan said. “You’re starting to say you’re going to use another child as a living donor, and that’s ethically really trouble.”

The supply of organs for child transplants is “extremely limited,” Caplan added.

“So you have hard choices to make,” he said. “Dialysis may be a better option.”

However, in recent years some hospitals have pioneered ways to use an adult’s kidney in a child.

According to the National Institutes of Health, 87,820 people were awaiting kidney transplants as of last February. The National Kidney Foundation, which seeks to enhance the lives of people affected by kidney disease, said 4,573 patients died in 2008 while waiting for kidney transplants.

A 2006 study from Ohio State University on kidney transplants for patients with mental disabilities found that the one- and three-year survival rates for 34 people were 100 percent and 90 percent, respectively.

“The studies reported good compliance with post-transplant medications due to consistent support from family members or caregivers,” the paper noted.

The researchers added that previous controversies over mental disabilities and transplants led the Joint Commission on Accreditation of Healthcare Organizations to express concern that many people with disabilities are “denied evaluation and referral for transplantation.”

Rivera’s blog noted that doctors said Amelia won’t need a transplant for six months to a year.

Some experts said that if Rivera’s claims are accurate, the hospital’s actions are very disturbing.

“Everyone deserves an equal chance to these organs, regardless of your mental capacity,” said Charles Camosy, a professor of Christian Ethics at Fordham University.

Camosy said that while it’s true that there are shortages of kidneys and other organs, the criteria used to make transplant decisions “should not ever devalue those that are mentally disabled.”

“This is a growing movement that transcends liberal or conservative that says this kind of life, because it’s so vulnerable, it deserves special protection,” he said.

Whatever the medical details of Amelia’s situation, her mother’s blog captured the anger of parents with disabled children who don’t want outsiders to decide life and death issues.

“Do not talk about her quality of life,” Rivera wrote of her exchange with the doctor last week. “You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don’t agree she should have it done? Fine. But tell me who I talk to next.”

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