A doctor at the Children's Hospital of Philadelphia (CHOP) has allegedly denied Amelia Rivera, a 3-year-old, a life-saving kidney transplant because the toddler suffers from a rare genetic disorder that causes mental and physical disabilities.
Amelia suffers from Wolf-Hirschhorn syndrome – a disease that affects one in every 50,000 births. Characteristics of the genetic disorder include seizures, intellectual disabilities, and delayed growth and development. Those with Wolf-Hirschhorn syndrome have distinctive facial features, including a broad, flat nasal bridge, and a high forehead.
Chrissy Rivera, the Amelia's mother, wrote in a Jan. 12 blog post that she and her husband went to CHOP expecting to start their daughter's transplant process (Amelia needs the kidney transplant within six months to a year). Instead, a doctor and social worker reportedly told the New Jersey couple that Amelia did not qualify for surgery because of her "mental retardation" and "brain damage."
"I put my hand up," Mrs. Rivera recounts in a blog post. " 'Stop talking for a minute. Did you just say that Amelia shouldn't have the transplant done because she is mentally retarded. I am confused. Did you really just say that?' I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded."
According to the 36-year-old high school English teacher, she offered to donate her own kidney, or find another donor if they were not a match.
"Noooo. She is not eligible – because of her quality of life. Because of her mental delays," the blog post reads. "He (the doctor) says each word very slowly as if I am hard of hearing."
Mr. Rivera, 39, told The Associated Press that he was stunned by the news. "It just felt like you were punched in the gut," he said. "It was mind blowing."
His wife has argued that the medical information on Wolf-Hirschhorn is "out-dated" and that Amelia could benefit from the kidney transplant. According to Rivera, Amelia will die if she does not receive the transplant within six months to a year.
Joel Newman, Assistant Director of Communications at the United Network for Organ Sharing (UNOS) – a private, nonprofit organization that manages the nation's organ transplant system under contract with the federal government – told The Christian Post that he could not specifically comment on Amelia's case. However, the decision to accept or reject an organ recipient is ultimately the transplant center's decision, he said.
"Programs do have the authority to accept or reject and [the decision] is not binding under any criteria," Newman stated. "One transplant center could use different criteria than another – where one might accept, another could deny."
Newman also pointed out that despite not knowing about Amelia's particular syndrome, he said some key issues that transplant programs take into consideration before accepting an applicant are: the medical risks involved (both during and after), the medication a person has to take following the surgery, whether or not there is a history of medical disease, and other problems that may arise even if the surgery is successful.
Amelia's story has seen an outpouring of support from other parents of special needs children. In addition to hundreds of complaints on its Facebook page, an online petition demanding that the Children's Hospital of Philadelphia allow the transplant has seen over 16,000 signatures.
A Maryland mother of two autistic boys, Sunday Stilwell, decided to launch the change.org campaign after reading Mrs. Rivera's blog.
"We had never met," Stilwell told ABCNews.com. "I read about what Chrissy went through and was inspired."
CHOP has since released a statement regarding the incident:
"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 CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability."
The hospital also responded to the backlash on its Facebook page saying, "We hear you."
"We feel and understand your frustration, but we are unable to comment publicly on individual cases," the statement read. "Each child is unique, and our goal is always to provide the best possible medical care for each individual patient."
Only a small percentage of children with Wolf-Hirschhorn live to adulthood, about 35 percent of kids with the disorder do not survive past the age of 2.