Monday, January 16, 2012

Who Determines Who Should Live and Who Should Die?

There's been a big movement in the special needs cyber world this weekend. The Children's Hospital of Philadelphia (CHOP) is apparently refusing to do a kidney transplant on a two-year old girl named Amelia. Without this transplant, she will most likely die in six months to a year from now. She has a kidney that would be donated from a family member. So why won't the hospital perform the surgery? According to Amelia's mother's blog, they won't perform the surgery because Amelia is "mentally retarded." Kidney transplants require a very complex drug regimen. Their reasoning is that in the future, after the parents have died, how could Amelia stay on top of the regimen should another kidney transplant be needed? (Kidney transplants are only good for about 12 years, according to the blog).

To clarify again, Amelia isn't on the kidney donor wait list. A family member is willing to donate a kidney for her. There's no indication that she would have a low survival rate for doing the surgery. It is known that she cannot survive without the surgery. So, why won't the hospital do the surgery? Is being "mentally retarded" reason to deny a young girl her life?

I believe that every person can bring value to the world. Every life is important and can--and most definitely will--contribute significantly to the world. This isn't always obvious, but it's there. Everyone makes their mark in the world in one way or another. Who knows? Maybe Amelia will inspire a loved one to do something amazing, like discover the cure for cancer.

I'm sure difficult decisions are made when a kidney becomes available to people who are waiting on the donor list. From what I understand, it's not given to the person who is first on the list. Many factors are considered such as finding the best match, giving it someone who would most likely thrive from the donation, etc. I'm sure factors like cognitive functioning come into play. But in cases where the kidney is only being donated because it's going to a loved one? I don't understand the reason to deny it.

I have a friend whose husband donated his kidney to their 7-year old daughter this past summer. It was a difficult procedure for both of them, and my friend had the stressful job of making sure the drug regimen was followed perfectly. I know that both my friend and her husband were so happy they did it. Their daughter is doing extremely well and has never been healthier.

I can't imagine another child being denied this same opportunity.

Please join me in signing this petition to let the hospital know your outrage. Maybe it will help them revisit this case and reconsider their decision. As I write this, over 14,200 people have already signed this petition! It would be great if 100,000 signed it!

5 comments:

  1. The impact the special needs community has made here is amazing. CHOP has actually stopped accepting comments on their FB page (at least it looks that way to me). We don't know yet how this will turn out, but I am emboldened by the knowledge that our kids have such wonderful support, and we can make such a huge impact in such a short time. I hope CHOP or another hospital steps forward to do the transplant.

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  2. This is just so unreal!

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  3. One day she will make her mark? well apparently that one is now since here she is mentally retarded and a child and sick and all over the world she is reaching out to people with this story bringing awareness to such an injustice! i think regardless of the outcome she has brought attention to such a horrible violation of human rights. I have heard about this story over the internet and thought oh this can't be real--then the news--at this point its everywhere.
    we have had a personal story in our own family of a kidney transplant too.

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  4. I'm curious to see the original reported story. Do you have a link?

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    1. Yes! I should have included this in my post. Here is the link to the post that Amelia's mother made when she first realized CHOP wasn't going to allow any kind of kidney transplant.

      http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

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