I find this outrageous on the part of the Doctor.
Parents of a Disabled Girl Denied a Transplant Blame One Doctor | Healthland | TIME.com (external - login to view)
The parents of a 3-year-old New Jersey girl who claim she’s being denied a kidney transplant because of her mental disabilities said their problems may be with one doctor, and not The Children’s Hospital of Philadelphia.
Chrissy Rivera posted a blog entry last week that described an encounter she claimed happened at The Children’s Hospital. She and her husband were there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. Amelia will need a transplant in six months to a year.
Chrissy Rivera, 36, wrote that a doctor, whom she did not name, told her and her husband that Amelia wouldn’t be eligible for a transplant because of her quality of life and her mental condition.
“I put my hand up. ‘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?’” she wrote. “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.”
“The studies reported good compliance with post-transplant medications due to consistent support from family members or caregivers,” the paper noted.
The researchers added that previous controversies over mental disabilities and transplants led the Joint Commission on Accreditation of Healthcare Organizations to express concern that many people with disabilities are “denied evaluation and referral for transplantation.”
Whatever the medical details of Amelia’s situation, her mother’s blog captured the anger of parents with disabled children who don’t want outsiders to decide life and death issues.
“Do not talk about her quality of life,” Rivera wrote of her exchange with the doctor last week. “You have no idea what she is like. We have crossed many, many road blocks with Amelia and this is just one more. So, you don’t agree she should have it done? Fine. But tell me who I talk to next.”