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

Jan. 31, 2012— -- 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."

Wolf-Hirschhorn Syndrome Causes Mental Delays

Wolf-Hirschhorn syndrome, caused by a missing part of the short arm of chromosome 4, occurs in about one in 50,000 live births. Disabilities can vary from child to child but can include seizures, hearing loss and eye malformations, as well as kidney, brain and skeletal abnormalities. Heart disease and frequent lung infections and immune deficiencies have also been reported.

Patients can be denied an organ transplant for a variety of reasons, according to the American Society of Transplant Physicians. Transplantation will not be offered to those would could be harmed by the surgery itself or by the immune-suppression that is required to prevent organ rejection.

Patients with weak immune systems or a high risk of infection, such as some children with Wolf-Hirschhorn syndrome, cannot be immunosuppressed, according to those guidelines.

Some doctors have reported that patients with Wolf-Hirschhorn syndrome have difficulty with anesthetics, because their heads and mouths tend to be small, making it hard to place a breathing tube during surgery.

Patients with severe heart disease may have an unacceptably high risk during surgery. Also, those who are not expected to live five years may also be denied a kidney transplant.

Patients with severe intellectual disabilities may be considered for transplant if the benefits outweigh the potential harm, say the guidelines.

Today, Mia cannot yet walk or talk, and has a gastrointestinal tube because she can't eat by herself. "But she smiles and plays and recognizes us and loves her brothers," said Rivera. "They love to play with her.

"Any mother wants the best for her child and will do whatever it takes to get it," said Rivera, "Mia isn't to blame for this. She didn't want or ask for this syndrome, and all we ask for is the right to fair medical treatment."

ABC News' Dr. Elizabeth Chuang contributed to this report.