Parents of children with disabilities and disability rights advocates are raising a huge outcry after a doctor at the Children’s Hospital of Philadelphia (CHOP) denied 2-year-old Amelia, who has Wolf-Hirschorn Syndrome, a kidney transplant. Wolf-Hirschorn Syndrome is a genetic condition occurring in 1 in 50,000 individuals; those with it have a “characteristic facial appearance, delayed growth and development, intellectual disability, and seizures.”
In a post entitled Brick Walls, Chrissy Rivera, Amelia’s mother, writes that her daughter’s doctor had told them that she would need a kidney transplant in 6 months to a year. Rivera then describes how another doctor accompanied by a social worker told her and her husband, Joe — Amelia had fallen asleep in her stroller — that Amelia would not be “eligible” for a transplant even with a family donor because she is “..already brain damaged and mentally retarded.” Rivera recounts a very painful exchange that followed during which she said:
“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”
Terri Mauro at the About.com blog on special needs children and Ellen Seidman at Love That Max are among those who have expressed shock at the denial of a necessary medical procedure for Amelia due to her disabiliity. Seidman cites a 2006 study according to which “before the ’90s, transplants were considered inadvisable for those with cognitive impairments” and also a 2004 questionnaire that The Arc (the US’s largest parent organization for individuals with developmental and intellectual disabilities) sent to members that found that “80 percent of people believed that those with cognitive disabilities are discriminated against when it comes to to organ transplant operations.”
CHOP has issued a statement on its Facebook page in which the hospital says that
We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments.
The statement also says that “all determinations of eligibility for transplantation are treated on an individual basis” using a “non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.”
This is all very reasonable — and, not surprisingly, parents are responding that it’s all (as it is) “empty words” and a “bunch of backside-covering PR-speak.” Elizabeth Aquino points out that CHOP is violating the United Nations Convention on the Rights of Persons with Disabilities. Article 25 on health says that parties are to “recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.” Article 10 is about the right to life and reaffirms that “every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”
You do have to wonder what’s going on when a hospital — when the medical profession — denies a life-saving medical procedure for a child with disabilities.
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