Chrissy Rivera, a New Jersey woman, reported in a blog post that a doctor and social worker at Children's Hospital of Philadelphia told her and her husband that their daughter Amelia would not be given a life-saving kidney transplant, even if the kidney were donated by a relative as they had intended. This was because of "quality of life issues" and also because "brain damage" and "mental retardation" were on a printed list of contraindications for that procedure. Amelia has Wolf-Hirshorn Syndrome, a genetic condition (though usually not hereditary) that affects multiple aspects of development.
Here is her original blog post: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/
Word spread in the special-needs community, and the hospital, which has an overall good record of care for special-needs children, is now facing a storm of criticism, including on its own Facebook wall. An online petition is now past 20,000 signatures. The "petition updates" tab at that last link now has dozens of media and blog links.
For me, this story is like a flashback to the struggles my parents went through in the 70s to get proper schooling and medical care for my developmentally disabled brother. They were once told by a doctor, "He [my brother] has pneumonia; he'll die if we don't give him antibiotics. Do you want us to give them to him?" Quizzical raised eyebrow, nudge-nudge. Those attitudes have changed, but it seems there are still some shameful holdovers in the medical community.
Of course, Chrissy Rivera's account is only one side of the story; the hospital cannot comment due to privacy rules. However, there are details in the blog account that ring true to me based on my parents' experiences, and that a parent who had not been through it would be unlikely to invent. Such as, the social worker writing notes with every expression of anger or disagreement; the implied threat of the parents being "diagnosed" as neurotic or hysterical or whatever terms they use nowadays, to destroy their credibility or even challenge their custody if they dare to make trouble. That's an old game. (The difference, today, is the Internet.)
If this were a matter of Amelia's priority on a donor list, I agree that there's a legitimate medical issue. There are too few donor organs, and the surgery Amelia needs is more difficult and more dangerous than the same operation on a "normal" child. But to those of us who share our lives with developmentally disabled friends and relatives, the doctor's remarks on "quality of life" come across as ignorant and outrageous.
Respectfully,
Myriad
Here is her original blog post: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/
Word spread in the special-needs community, and the hospital, which has an overall good record of care for special-needs children, is now facing a storm of criticism, including on its own Facebook wall. An online petition is now past 20,000 signatures. The "petition updates" tab at that last link now has dozens of media and blog links.
For me, this story is like a flashback to the struggles my parents went through in the 70s to get proper schooling and medical care for my developmentally disabled brother. They were once told by a doctor, "He [my brother] has pneumonia; he'll die if we don't give him antibiotics. Do you want us to give them to him?" Quizzical raised eyebrow, nudge-nudge. Those attitudes have changed, but it seems there are still some shameful holdovers in the medical community.
Of course, Chrissy Rivera's account is only one side of the story; the hospital cannot comment due to privacy rules. However, there are details in the blog account that ring true to me based on my parents' experiences, and that a parent who had not been through it would be unlikely to invent. Such as, the social worker writing notes with every expression of anger or disagreement; the implied threat of the parents being "diagnosed" as neurotic or hysterical or whatever terms they use nowadays, to destroy their credibility or even challenge their custody if they dare to make trouble. That's an old game. (The difference, today, is the Internet.)
If this were a matter of Amelia's priority on a donor list, I agree that there's a legitimate medical issue. There are too few donor organs, and the surgery Amelia needs is more difficult and more dangerous than the same operation on a "normal" child. But to those of us who share our lives with developmentally disabled friends and relatives, the doctor's remarks on "quality of life" come across as ignorant and outrageous.
Respectfully,
Myriad
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