Friday, January 13, 2012

Honk Honk

I have always tried to do the "right" thing, and I expect that of others too. When I drive, I am a honker! If someone is doing 45 on the interstate, I honk!!! Not only because I am annoyed (which I am, I admit) but also because it is dangerous, it could hurt someone, and it is wrong! My mom has always told me that I can't right the world's wrongs. And my reply has always been that I can right the ones I see!

Since I have been immersed in this world of Special Needs the last few months, I have become much more sensitive to things. The word "retarded" has *always* bothered me, but now that my child has a syndrome that has an intellectual disability attached to it, I am much more angered and appalled when that word is used, especially by people who should know better.

I am also much more aware of things that I never really thought about. Like "quality of life" and "patients rights" and the American's with Disabilities Act. Which is why, when this blog popped up on my facebook newsfeed, shared by another Angel mom, it caught my eye. I vaguely remembered, in the early days of our diagnosis, hearing of a child who was denied an organ transplant based on their disability. Honestly at the time, I was so overwhelmed that I didn't give it much thought. But now, having read this (and I don't know if this is the same child or not- I am guessing no, which is even scarier!) I am OUTRAGED by this hospital's decision. Not only did they decide that this precious little girl, who has a condition called Wolf-Hirschhorn Syndrome, was not deserving of a life saving kidney transplant, but they obviously have decided that they should be the ones to decide if children are "worthy" of services. Yes, this is an important, life saving operation that is desperately needed for sweet Amelia. BUT, is that where it ends? What if she needed another operation? Would they refuse because she isn't able to count to 10? Will they next refuse her treatment because she can't tie her shoes? Are typical children the only ones worth treating and saving? And if the answer is no, where is the line drawn? Is Amelia less human, less beautiful than other children because of her disability?

I find it ironic that, on the Children's Hospital of Philadelphia home page, they proudly (and by law) display that they are an Equal Opportunity Employer. It states that "The Children's Hospital of Philadelphia is an equal opportunity employer. We do not discriminate on the basis of race, color, gender, sexual orientation, age, religion, national or ethnic origin, disability or veteran status." So apparently they will hire you if you have a disability, just don't need a life saving operation (she, by the way, has a large family willing to donate the kidney for her!) or you will be out of luck!!!

This is an important and vital issue to me. I do not know this mother. I am praying for her and angered by this situation. But I would be lying if I didn't see the implications for my child in this as well. Ava is, thankfully, a very healthy child. But we could be in a terrible accident tomorrow and she could need a transplant. What would our doctors tell us? That she will never live a "normal" life, so she is not worthy of the operation??? (by the way, if I am ever told that, they need to have several large security guards ready. with tasers. and pepper spray. and cuffs. because momma bear would be out claws first on that one!) I cannot see how this is legal under the American's with Disabilities Act. Honestly, I know little about the ADA at this point. But I am certain that this mom and dad are doing everything they can legally to get their daughter the operation she needs.

But we can help! I know how important public image and media relations are to large hospitals. So please, take a few moments and contact the media in Philadelphia. Tell them how you feel. Tell them it is for Amelia. Here are the links to the network affiliates contact pages. Speak out. It doesn't matter that you don't live there. This has much wider and broader implications. For ALL children. Not just the disabled ones!

NBC  (at the bottom, under the "follow us" block, there is a link to send news ideas and tips)

And while you are in a sharing mood, feel free to share your thoughts on the Children's Hospital of Philadelphia Facebook page- hundreds (including me!) already have!!!