Saturday, January 14, 2012

The Line

If you read my previous post, then you know all about Amelia Rivera and her battle to get a kidney transplant done at Children's Hospital of Philadelphia, or CHOP. In case you didn't read it, here is the short version: Amelia was born with a condition called Wolf-Hirschhorn Syndrome, and she is mentally disabled. A few days ago, her parents met with a physician from the CHOP transplant team as well as a social worker, and were informed that their precious daughter would not be eligible for a kidney transplant, despite the fact that their large family were all willing to donate. This decision was based solely on the fact that little Amelia is mentally and developmentally disabled.

As the mother of a child who is, to the medical community, considered mentally disabled, I am so very angered by this! How can they say that this child's life is less than any other child. Because she cannot walk or read or count to 10, she is automatically disqualified from receiving a vital organ transplant? What makes her less worthy of this kidney than say, the school bully? Or a convicted felon? If we are going to offer medical services based on what is going on inside of someones head, wouldn't they be disqualified, too?

This is a dangerous and deadly practice that happens more than I would like to consider. And not just at CHOP! And it should be a concern for ALL parents, even those of typically developing children! And here are some reasons why EVERYONE should be against this deplorable attitude:

  • Where is the line drawn? Take my sweet Ava, as an example. Angelman Syndrome has a varied spectrum of severity, but all Angels, including Ava, are nonverbal and it is very difficult to measure intelligence. However, if you spend any time around Ava, you *know* she is intelligent, despite her delays and limitations. She follows directions (and sometimes disobeys them- just to laugh at your reactions!), has an AMAZING visual memory (even for her typical peers!), and is very inquisitive- always looking under things and trying to take things apart. But it would be impossible to measure her IQ or what she really knows because of her AS. So which side of the line would she fall?
  • What about Autistic children? Talk about a spectrum! There are so many children with Autism, at what point would they say sorry, your child is TOO Autistic to be saved.
  • What if a typical child is in an accident and has brain damage? There is no way to know what that child (or really any child with mental disability)  will be able to accomplish or do! Would they be denied a vital organ transplant?
  • Is this going to be limited to organ transplants? What if a child has cancer, and also happens to be mentally disabled? Will they decide that child is not worth treating?
  • Will the line be drawn at mental disabilities??? What about people who are physically disabled? Should they be concerned that one day, a doctor might deem them "unworthy" of a life saving operation based solely on their disability???
Typical parents should be concerned about this just as much as the special needs community. Why? Because in an instant, your life can change and YOU might be a special needs parent. I never thought I would have a special needs child. No one really ever thinks that something like this can happen to you. But these things CAN and DO happen. And in that instant, your life is changed. Having a different set of medical "rules" and "standards" should be the ONE thing that does NOT change for your child in that instant. PLEASE, for my Ava and all of the other precious, amazing, worthy special needs children out there- FIGHT THIS!!!!!!!