Mama and Dad

FINALLY -- major news outlets have written about whether a New Jersey child who has a genetic condition and intellectual disability should be denied a kidney transplant. The blogosphere has been abuzz with opinions by parents of children with special needs over the last couple of days and over 38,000 people have signed a petition asking the Children's Hospital of Philadelphia (CHOP) to reverse its decision.

Today in the Huffington Post, Parentlode blogger Lisa Belkin argues that Amelia Rivera (left) should not be eligible for a transplant. And in a companion piece, Susan Senator, author of Making Peace with Autism, argues that she should.

Check out this interview with the family on NBC.

You can read Amelia's mother's account of a conversation she had with a transplant doctor at CHOP about Amelia's eligibility. And you can read a number of responses CHOP has posted about its transplant criteria on its Facebook page.

You may also be interested to read these recent BLOOM posts about an ethics conference at the Montreal Children's Hospital which looked at how cultural devaluing of children with disabilities plays out in their care:  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.

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."




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