Saturday, January 14, 2012

Hope Lives Here

This phrase is written on the banners at the Children's Hospital of Philadelphia.  It's on the hospital's Facebook page and all over the website. 

Hope Lives Here.

But apparently, that hope is only for children who are typically-developing.  It's only for the "normal" kids.  It's only for those who are deemed worth keeping.

If you haven't heard the story yet, go here to read about Amelia, a little girl with developmental and cognitive delays who needs a kidney transplant.  Without a new kidney, she will most likely die within six months.  Her family wants to donate one to her, but the transplant committee said that she was ineligible to receive a kidney because she is "mentally retarded."

Side Bar:  I absolutely despise the R-word.  I always have, and have been known to give kids an earful who let the word slip from their mouths.  It bothers me even more now.  In case you're an R-word user and don't know what else to say, try one of these:  "developmental delays," "cognitive delays," or "global delays." 

Who is this doctor, or the transplant committee, to determine whose life is and is not worth saving?  It's not as if she has a medical condition that would prevent her from being able to make it through the surgery.  It's simply because she has cognitive delays and the transplant committee does not think it's "worth it." 

I think the worst part of the whole thing was the insensitive, cold-hearted, social worker.  For a person who is supposed to support the patient's family and show compassion during difficult conversations, she was about as heartless as she could be.

Shame on you.  Shame on you.

But let's not lay blame on CHOP as a whole.  I'm certain that there are wonderful, caring doctors there who are appalled to hear such a thing happening at their hospital.  I also know that there are many, many surgeons who perform lifesaving surgeries every day.  At one point, we were thinking that Abby would have her VEPTR rib surgeries there and felt confident in the abilities of the surgeon.  (It does not appear that Abby needs to have the VEPTR rib surgeries.  If she does, we will still go to CHOP.)

So don't give up on CHOP.  It's an awesome hospital.  Focus your anger on the pitiful excuse for a doctor who feels like he has the power to choose who lives and who dies.  I'll get mad at CHOP if their response to the outrage of the special needs community is one of indifference or even support of the doctor.  Until then, I'm giving them the benefit of the doubt.

If this story bothers you, if it makes you angry and heartbroken for Amelia and her family, then do something about it.  Blog about it.  Post the story to your Facebook page.  Tweet and text Amelia's story.  Tell people about it.  Go to CHOP's Facebook page and tell the hospital administrators how you feel.  CHOP needs to be reminded that all children are a gift from God and deserve to have a chance at life.

Psalm 139


13 For You formed my inward parts;

You covered me in my mother’s womb.

14 I will praise You, for I am fearfully and wonderfully made;[b]

Marvelous are Your works,

And that my soul knows very well.

15 My frame was not hidden from You,

When I was made in secret,

And skillfully wrought in the lowest parts of the earth.

16 Your eyes saw my substance, being yet unformed.

And in Your book they all were written,

The days fashioned for me,

When as yet there were none of them.

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