South Jersey woman says daughter was denied transplant because of mental disability

[proud2BlibKansan]

A South Jersey woman is fighting the Children's Hospital of Philadelphia on a recommendation to deny her three-year-old daughter a kidney transplant.

Chrissy Rivera said a CHOP doctor told her in a meeting last week he would not recommend her daughter for a transplant because she has Wolf-Hirschorn syndrome, which causes delayed growth and physical and intellectual disability.

"We were shocked,” said Rivera. “We thought we were going into a meeting to learn about what happens in a transplant and we were told she wasn't eligible."

CHOP cannot comment on Rivera's case due to confidentiality rules, but in a statement wrote, “The Children’s Hospital of Philadelphia does not qualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities.”

more . . . http://www.newsworks.org/index.php/local/item/32692

[Maine-ah]

1. is it possible that

they denied it because her particular disease also causes delayed growth and could cause problems with the transplant?

[Yo_Mama]

2. It's probably something like that

That particular syndrome has widely varying effects, but some are pretty rough and might make this child a poor candidate for a transplant.

This article has more info in it, including a link to the mother's blog:
http://yourlife.usatoday.com/parenting-family/special-needs/story/2012-01-16/Team-Amelia-backs-transplant-for-special-needs-child/52603482/1

The mother's blog so we can read her side of the story:
http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

One potential problem making a successful transplant unlikely would be seizures - some of these children have major, uncontrollable seizures. Some don't. Some have severe breathing problems. Some don't. Some have heart problems. Some don't.

If there is a very high probability of failure, it is generally considered unethical to do the operation. And if the operation were to be successful but the patient's life were not to be significantly extended, there may be an ethical problem. I do wonder if a child like this could survive long term on the immune suppressive drugs, but again, it would depend on her overall condition.

There's a picture of the kid at the blog. Awful choice either way. Dialysis might give her a longer life - I don't know.

[Yo_Mama]

3. On the CHOP Facebook page there are comments that Amelia will get the kidney

They are doing a family donation and CHOP agreed to do the surgery. I don't know if that is true or not, because I can't find a news article. It may just be a rumor. Living donor kidneys are supposed to work better, anyway.

[Odin2005]

4. Eugenist FUCKERS!!!

[cbayer]

5. To be fair, this rare syndrome is much more complex than just a mental disability.