Amelia Rivera, Mentally Disabled, May Get Kidney Transplant After All

PHOTO: Amelia "Mia" Rivera needs a kidney transplant to live, but according to her mother, Children?s Hospital of Philadelphia has not recommended she be eligible.
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Chrissy Rivera, the mother of the 3-year-old girl who was initially told by a doctor at Children's Hospital of Philadelphia that he would not recommend a kidney transplant for her mentally disabled daughter, is "hopeful" the hospital will help after an outcry of indignation online.

More than 37,000 online supporters petitioned after Rivera had blogged about a doctor who called her daughter "mentally retarded" and said he would not recommend transplantation.

Rivera met with Children's Hospital of Philadelphia doctors Friday to see if Amelia "Mia" Rivera, who has Wolf-Hirschhorn syndrome, would be eligible for a kidney. It is up to a larger transplantation committee to decide if the girl qualifies.

"They are moving us through the steps," said Rivera, a 35-year-old New Jersey high school teacher who has two other children, ages 11 and 6. "It is not a 'yes' or a 'no' at this point. But, yes, I am hopeful."

Children's Hospital of Philadelphia had no immediate comment on these developments.

Mia's complex genetic disorder results in severe mental and physical impairments, and specialists have said that without a transplant, Mia would die within six months to a year.

"We had a positive meeting with the nephrologist and the head of nephrology and nursing," said Rivera. "They took us through the steps and told us the risks. No decision has been made, but it's a process ... that anybody has to go through.

"I didn't see any red flags at the meeting," she said. The Riveras will meet again with doctors from Children's Hospital of Philadelphia in March to review the girl's case.

In the meantime, Mia is "doing very well," said her mother. "She is very healthy."

The little girl's plight received national media attention when supporters petitioned the hospital through Change.org, which successfully battled Bank of America over its $5 debit card fee, and Verizon over its online payment fee.

"The fact that CHOP [Children's Hospital of Philadelphia] is reconsidering Amelia's surgery is a remarkable testament to the potential of online campaigns to literally change people's lives," said Benjamin Joffe-Walt, spokesman for Change.org.

"It's positive and awesome," said Rivera. "We definitely appreciate everything."

Rivera blogged about what she said was her daughter's transplant "rejection" two weeks ago.

The Riveras said a doctor at Children's Hospital had initially advised against a kidney transplant "because she was mentally retarded.

"Those were the exact words on a piece of paper," Rivera wrote in her blog.

Rivera said the doctor also mentioned the medication that Mia would have to take for the rest of her life -- and "how important it was she take it -- and who would make her take it when we weren't around anymore?"

"Everyone should be treated equally," she said at the time. "This is outrageous."

Mia's father, Joe Rivera, told the Associated Press that the family had been happy overall with the care at Children's Hospital, but that "one guy tarnished their reputation."

"It just felt that you were punched in the gut," said Rivera, 39. "It's mind-blowing how people think these days."

Some medical ethicists were outraged too. Charles Camosy, an assistant professor of theology at Fordham University, blogged that the doctor's recommendation "appears to be based on a judgment that certain human beings are worth less than others, and that this particular human being has apparently been determined to be worth less because of her mental capacities.

"It is the logical outgrowth of several other kinds of similar judgments in other medical contexts, and we should not be surprised if it has happened."

About 35 percent of children with Wolf-Hirschhorn syndrome do not survive beyond the age of 2, although several individuals have lived to adulthood.

Rivera argues that medical information about the syndrome is "outdated" and there is now "hope" that Mia could benefit from a kidney transplant.

When the media first reported the story two weeks ago, the hospital would not respond to questions about the Rivera case, citing privacy laws, but it provided a prepared statement, which read: "The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at Children's Hospital of Philadelphia are deeply committed to providing the best possible medical care to all children, including those with any form of disability."

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