Saturday, January 14, 2012

Cognitive disability disqualifies child from transplant

Donna Thomson, author of Four Walls of My Freedom, posted today about a New Jersey family (above) whose daughter Amelia is being denied a kidney transplant because she has 'mental retardation.'

Amelia has Wolf-Hirschhorn Syndrome, a genetic condition associated with intellectual disability.

The story was posted by her mother on this site run by parents of children with the syndrome. Amelia (above centre) needs a kidney transplant. Here is part of the conversation her mother Chrissy reports between herself and the Nephrology doctor at the Children's Hospital of Philadelphia:

"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?"

"Yes, this is hard for me you know."

My eyes burn through my soul as if I could set him on fire right there. "Ok, so now what? This is not acceptable to me. Who do I talk to next?"

"I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and then we will vote."

"And then who do I see?"

"Well, you can then take it to the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won't be done here."

The Children's Hospital of Philadelphia posted this message on its Facebook page yesterday: CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status.

I think the operative word here is 'solely.' The hospital has not said it doesn't consider intelligence in its evaluation for eligibility, only that IQ is not the sole factor.

I did a quick google search and found this study which showed that kidney transplants were just as successful in people with intellectual disability as those without, in terms of survival rates after one and three years.

I also found this paper about an area in Northern Italy that denies any organ transplants to people with intellectual disability. People with intellectual disability are simply not eligible for transplants there.

BLOOM has posted a number of pieces recently about how cultural devaluing of people with disabilities plays into decisions about their care, including whether care is withdrawn: The disability paradox; Costs, quality-of-life ratings puts complex kids' care at risk; Burden of kids not whole picture, ethicist says; and A fate worse than death.

We've also posted about protocols that would see children with certain intellectual and physical disabilities denied intensive care treatment during a pandemic.

Here is a video about Amelia.

I tried to post a comment on the Wolf-Hirschhorn website, but the story has gone viral and I believe is getting so many hits that the comments function seems to have frozen.

So let us know what you think about this here! Louise


I am appalled, but sadly not surprised.

Does their ethics board contain family reps who have children with complex medical needs? And how value neutral are these decisions and policies? I recall talking to a local law prof here who speaks about bioethics in the media. I asked him if he ever spoke to families...he looked at me like I was on another planet.

I abhor the term 'quality of life'. Quality of life to a specialist physician who believes in smarts and academics is very different than quality of life for those of us with children with disabilities...there are such terrible assumptions in these conversations. I don't forget that 30 years ago, hospitals in Alberta would not fix the hearts of children with Down syndrome. We clearly still have a long ways to go...

I tried to email you last night, Louise, when all of this broke virally, but the email bounced back. I just knew you needed to see it. I have gotten nearly triple the number of hits on my own blog since I posted about it and believe that something good must come out of this deplorable situation. Thank you for adding your own authoritative voice. You can go to and sign a petition for the family.

Thanks Sue and Elizabeth -- here's a link to the petition Elizabeth noted

Over 12,000 people have already signed it.