Monday, January 16, 2012

Philadelphia Freedom (Unless You Have "Mental Retardation" and Need a Transplant)

"'Cause I live and breathe that Philadelphia freedom
From the day that I was born, I've waved the flag ...."
"Philadelphia Freedom" ~ Elton John

"Oh, brother, are you going to leave me wasting away
on the streets of Philadelphia?"
"Streets of Philadelphia" ~ Bruce Springsteen

Maybe this happens to other people who move away from the city where they were born and raised and lived within 2 hours of for their entire lives. 

Maybe the miles between give you a sort of a perspective, a sense of seeing your city as other people see your city.

If that's the case, then my hometown of Philadelphia isn't looking too much like the City of Brotherly Love lately.

Because tonight, I'm thinking of the fact that my city has had 17 homicides since the start of 2012 -but I am most especially thinking of a crime in Philadelphia that occurred against a 2 year old girl named Amelia that has the disability community absolutely outraged - as well it rightfully should.

All the details are here, in this blog post ("Brick Walls"), written by Amelia's mother, Chrissy, after an emotional meeting at the Children's Hospital of Philadelphia (CHOP), where she and Chrissy's father Joe were told that Amelia could not and would not have a life-saving kidney transplant at CHOP. 

The reason?

Amelia has a rare condition called Wolf-Hirshhorn Syndrome, which causes cognitive impairment. She also has seizures as part of her disability.

According to the transplant team, Amelia has "mental retardation" and that, you see, affects her quality of life and her ability to take the required transplant medications. All of which makes her an unsuitable candidate for a transplant. 

Read that again. (No, rather, read Chrissy's heartwrenching blog post (if you haven't already done so) and then come back here.  I'm not going anywhere.) 

I first learned of this situation on Friday night through a friend on Facebook, who forwarded me Chrissy's blog post, which I then posted to my Wall.  I was - still am - outraged. Appalled. Saddened. On so many levels.  At the use of the archaic and dated terminology.  At the horrible way this family was treated. 

I knew I wanted to write about this but it has taken me several days to even begin to be able to because this hit home for me for several reasons.

For starters, I know CHOP.  Or, at least, I thought I did.  I've been to CHOP more times than I ever imagined I would be, starting when Boo was all of five weeks old and we were told by our primary care pediatrician on the day after Christmas to get him down there as soon as we could because he had a hernia. Our developmental pediatrician who we saw for Boo's autism was there, our ENT who gave us his home phone number after both kids' operations for their tubes was there, and probably several other specialists who I am forgetting.

We have always had top-notch care. That's what you expect from CHOP.  That's what every family deserves, everywhere. 

But as many of my friends know first-hand - and what this godawful situation at CHOP shows - is that if a toddler with a cognitive disability can be denied a kidney transplant in such a callous and cold manner at one of the nation's most prestigious and most renowned children's hospitals, with the most sterling of reputations, then what's stopping this from happening at other medical centers?

In other words, if this can happen at CHOP, then what's stopping this from happening elsewhere?

Not much.

NO PARENT deserves to have a doctor sit across from him or her, playing God, making grand pronouncements about a sleeping baby in a stroller's quality of life. NO PARENT deserves to have someone say, "We've been warned about you."

What did they expect the Riveras were going to do after hearing that the team wouldn't allow them to move forward with the transplant (one that they plan to identify a family member as a potential match for) that could save their daughter's life? Simply collect their daughter and their things, say thank you, and be on their way?

As one might imagine, through Amelia's mom's blog, the Rivera's story quickly went viral. When last I checked on Friday night, CHOP's Facebook page was a maelstrom of vitriol.  A petition on garnered 16,000 signatures.  Several of my friends have written posts about Amelia's situation. (See Susan Senator's "Everyone Deserves a New Kidney"; and Love That Max's post here;)

The good news is that there might be a resolution after all.  According to CBS Philadelphia, CHOP officials have contacted Chrissy Rivera and want to discuss Amelia's case further

I hope that CHOP does the right thing here and allows this transplant to proceed. (And arranges it so that this doctor can never talk to a family in this manner ever again.)

Because as much as I love my newly adopted city of Pittsburgh, my heart will always belong to Philadelphia.

And I don't want to see one more crime on its streets.

copyright 2011, Melissa, The Betty and Boo Chronicles If you are reading this on a blog or website other than The Betty and Boo Chronicles or via a feedreader, this content has been stolen and used without permission.

1 comment:

Elizabeth said...

While I am glad that the hospital is reconsidering its earlier decision, what this whole story has brought to life is how much work remains to be done for those of us caring for a disabled child or those of us who are disabled. Over the last couple of days, the debate over this issue has reached grotesque proportions -- if you read the comment threads on Huffpost you would be horrified and enlightened, I am sure.

Thank you for adding your voice.