Disabled NJ Girl Denied Transplant Gets Mother's KidneyOct. 11, 2013
By SUSAN DONALDSON JAMES
PHOTO: Amelia Mia Rivera needs a kidney transplant to live, but according to her mother, Childrens Hospital of Philadelphia has not recommended she be eligible.
Girl, 5, Recovering From Kidney Transplant After Initial Denial VIDEO
Mom Says Impaired Child Denied Transplant
The New Jersey girl who was initially denied a transplant because of her mental disabilities has received a kidney and is at home with her two older brothers on the way to recovery.
Amelia Rivera, now 5, received a kidney from her mother, Chrissy Rivera, on July 3 at Children's Hospital of Philadelphia. Her case inspired the state to pass legislation that prohibits discrimination against transplant patients.
"Things are going really well for Amelia and we were very pleased with the care we received from CHOP," Rivera told ABCNews.com.
Rivera and her husband Joe said the care at CHOP was excellent and they have no hard feelings toward the hospital. But they said they hope others don't have to go through their ordeal.
WHAT TO KNOW
Wolf-Hirschhorn syndrome occurs in about one in 50,000 live births.
Serious impairments include seizures, hearing loss and eye malformations, kidney, brain and skeletal abnormalities.
Heart disease and frequent lung infections are also reported.
About 35 percent children do not survive beyond the age of 2.
"This wasn't a one-time deal that happened just to us, this happens across the world, across the United States," Chrissy Rivera told ABC's affiliate WPVI. "We hope that we can move forward as a society and include everybody."
CHOP confirmed to ABCNews.com today that the surgery was successful.
They issued this statement: "We are gratified that the care and skill of the CHOP Transplant Team and clinical support staff have helped Amelia and her family and are very pleased with the successful surgical outcome. Throughout this process, we have been inspired by the love Amelia's parents have shown for their daughter, and, in particular, their fervent advocacy on her behalf."
Mia, as she is known by her family, stayed about a month in the hospital and had a few setbacks, but she is thriving now.
"She is just a lot of fun to be around," said Rivera. "She definitely has that connection with people that kind of melts your heart."
"Amelia received her new kidney and I was proud to be the organ donor," wrote her mother on her blog, "Demolition of the Brick Wall."
She said Mia was "smiling, rolling, and waving at herself in the mirror."
Amelia was released on July 12 but returned to the hospital with an infection for 24 days before going home.
Toledo throws out brother's kidney, triggers lawsuit.
Last January, the family had waged a campaign on Change.org and on Twitter to pressure the hospital to grant the little girl with Wolf-Hirschhorn syndrome a kidney transplant.
In a February 2012 statement, the hospital apologized to the family, though it said it had never been its policy to "disqualify transplant patients on the basis of intellectual ability."
The hospital and the family said at the time that they were discussing transplant options.
Mia has a complex genetic disorder that causes mental and physical impairments.
Wolf-Hirschhorn syndrome occurs in about one in 50,000 live births. Health problems can vary from child to child, but some serious impairments include seizures, hearing loss and eye malformations, as well as kidney, brain and skeletal abnormalities. Heart disease and frequent lung infections, as well as immune deficiencies, are also reported.
Her family said she would have died if she had not received a transplant with the next year.
About 35 percent of the children with Wolf-Hirschhorn syndrome do not survive beyond age 2, although several individuals have lived to adulthood.
Her mother, a 36-year-old English teacher, was willing to donate a live organ, but the hospital reportedly told her that they would not recommend transplantation for the toddler because of her disabilities.
"I didn't think it was going to be an issue," Rivera told ABCNews.com at the time.
But when the family went to CHOP to discuss the transplant, Rivera said she "thought we were just finding out how transplant works and how we could be a donor."
"But then, I was told we couldn't because she was mentally retarded," she said. "Those were the exact words on a piece of paper."
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."
Rivera also argued that medical information about the syndrome was "out-dated" and there was "hope" that Mia could well benefit from a kidney transplant.
At the time, CHOP responded to the outcry on its Facebook page: "We hear you."
Other medical ethicists defended CHOP, suggesting its decision was not based solely on Mia's disability.
"It is appropriate to decline to perform transplants that are medically contraindicated, but denials based solely on the presence of mental retardation would be a throwback to the practices 40 years ago when Down syndrome children were frequently allowed to die for lack of treatment of correctable conditions," R. Alta Charo, a professor of medical ethics at University of Wisconsin, told ABCNews.com last year.
http://abcnews.go.com/Health/disabled-nj-girl-denied-transplant-mothers-kidney/story?id=20543046&singlePage=true
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