Mom says disabled daughter denied life-saving kidney transplant
(CBS) Three-year-old Amelia Rivera desperately needs a kidney transplant to live. But Amelia's mom, Chrissy, says the Children's Hospital of Philadelphia won't let her daughter get a transplant because she is "mentally retarded."
Amelia was born with Wolf-Hirschhorn syndrome, a genetic condition that affects about one in 50,000 children. The syndrome is characterized by a distinct facial appearance - including a high forehead and broad nose - delayed growth and development, intellectual disability, and seizures.
During a regular appointment with Amelia's nephrologists, Chrissy Rivera was referred to a transplant team to discuss the kidney transplant Amelia would likely need within the year to survive, Rivera wrote on a blog on a Wolf-Hirschhorn support website.
That's when Rivera reportedly met with a doctor and a social worker who told her that Amelia should not have the transplant done because she is "mentally retarded" and would not be able to get on a transplant waiting list. When Rivera said someone in her large family would donate the kidney - thus bypassing the transplant list - the doctor allegedly said Amelia still would not be eligible because of her mental delays and quality of life.
"We were told many times throughout the meeting that she cannot have the transplant because she's considered mentally retarded," Rivera told CBS Philadelphia. The hospital also told Rivera that some of the transplant medications would interfere with Amelia's anti-seizure medications, and she might need another transplant later in life.
"I said, so you're saying in six months to a year when her kidneys fail you want us to let her die? And he said yes," Rivera told CBS Philadelphia.
That's when an outraged Chrissy went home and decided to write the blog, which has since gone viral. A petition on change.org that demands that the hospital reconsider its position has already gotten more than 21,000 signatures.
What does the hospital have to say? "We feel and understand your frustration, but we are unable to comment publicly on individual cases," The Children's Hospital of Philadelphia said in a statement on its Facebook page. "The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities."
CBS Philadelphia reports the hospital has another meeting with the family on Tuesday.
What's the official policy on transplants for all people with disabilities? Turns out, there isn't one.
United Network for Organ Sharing (UNOS), told CBS Philadelphia that it's up to the individual hospitals and their doctors to determine if someone is an appropriate candidate for transplantation.
The Washington Post reports transplant centers' policies on considering transplants for people with intellectual delays are "all over the map." About 39 percent of programs across the country "rarely" or "never" factor intellectual disabilities into transplant decisions, while 43 percent "always" or "usually" take intellectual disabilities into account, according to the paper.
Dr. Arthur Caplan, professor of medical ethics and health policy at the University of Pennsylvania, wrote in a commentary on MSNBC that morally, this is a sticky issue.
"Those being considered for a transplant must be able to comply with what is required after a transplant - taking a lot of medicines and watching out for early signs of rejection of the transplanted kidney," Caplan wrote. "This means that those with severe mental impairment need willing, round-the-clock helpers so that the transplant has a reasonable chance of succeeding."
Caplan said some mental disabilities are linked to genetic problems that could affect other organs and shorten lifespan. Because of that, he said, transplant programs sometimes won't operate on patients who face a shortened lifespan, when there is such a huge need for transplants among other children.
"There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant," Caplan said. "But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases."
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