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Saturday, January 14, 2012

Denied A Transplant

Amelia is a 2 yr old girl who has Wolf Hirshorn syndrome. I hadn't heard of this syndrome before today. I don't know what it entails, nor do I know the back story of Amelia. All I know is the blog post from her mom saying that Amelia will need a kidney transplant in about 6 months to a year.

The Nephrology doctor told them he wouldn't recommend she get the transplant because she is mentally retarded. He says she will never get on the waiting list because of that.

The parents say that isn't a problem; when the time comes one of them plan on donating. And if neither of them are a match they have a large family and someone will donate.

The doctor says that still doesn't matter. To quote from the blog post, "“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing."

I can't believe a child would be denied an organ transplant because of their cognitive delay. How does that make their quality of life any less? How does that make them any less deserving of a chance to continue with their life?

I didn't realize this wasn't unusual. Since the story broke on FB I have seen several comments from parents with children with Down syndrome say they were told the same thing about if their child needed a transplant - they wouldn't be eligible.

How can that even be legal?

It reminded me of the Baby Doe case. Although that was reverse in that the parents didn't want the life-saving surgery for their son and the doctors actually did. Baby Doe, who had Down syndrome, was born with esophageal atresia. Surgery would attach his esophagus but his parents elected not to have the surgery performed. Without the surgery Baby Doe died.

Reading more on the Baby Doe law I see that it was amended in 1984 to include children, not just newborns. Specifically stating, "the amendment extended the laws defining child abuse to include the withholding of fluids, food, and medically indicated treatment from disabled children."

Based on the wording in that law I don't see how Amelia, or any child with a cognitive disability, could be denied a transplant - isn't a transplant considered "medically indicated treatment?"

A petition has been started asking CHOP to allow the transplant to happen. I signed it, but after the meeting with that doctor and social worker, I think I'd rather have my child's transplant happen at another hospital.

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Kim@stuffcould.... said...

This is sad

Unknown said...

Ironically, I just heard about it this week as well as someone I know that is pregnant has been diagnosed with it and many other complications. Thank you so much for sharing this information. It's really sickening to me because I had no idea that they could do something like that. In my short time as a mother of a 5 month old with Ds, I have experienced some ugly sides of the medical world. None to this degree and I dread the day, for them and myself. I can't imagine how they felt and my heart is aching for that pain and pure anger. I do hope they keep fighting and pushing. I have shared the story on all media outlets I am a part of. Thanks again!

Cindy said...

Wow! That's shocking. Who decided that her quality of life was insufficient??

Anonymous said...

Wow....this is just....heartbreaking!
I have a daughter, she turns 3 this April.
She has Down Syndrome, and was liver transplanted in September 2010.
There was never any questions of her getting the transplant or not, she was treated like anyone else.

Hope that the sweet little girl gets the transplant she needs!

Grethe, Norway.

jenny said...

thats way to uncalled for and i think as most parents do and that is do some thing to stop them from doing that to that family thay should get a hold of a state rep or some one so thay can get a law set up that regards to how a person my look or reqards to the disabilty as long as if not going to kill them i say with then a years time thay should let that child have what she need to help her get better and to keep her well.

Mom24 said...

I can not stop thinking about this, after I saw it on FB. Who does that doctor, and evidently many others, think they are to play God like that and decide which lives are worth living? So, so sad.