Saturday, January 14, 2012

What is "Quality of Life?"

WARNING:  Rant coming

What is quality of life?  I asked my kids.  "The extent to which you live it and the opportunities you take advantage of."  "How happy you are."  "How you react to your experiences.  How you treat people and they treat you."

Anyone seeing anything here about IQ levels?  Hm, me neither.

 I was visiting with a mom who's son has Down's Syndrome, Trisomy 21, while both our kids were under general anesthesia.  We were hanging out it that wonderful place called the "parent's waiting room" at PCMC.  (They really ought to offer parents anti-anxiety meds in there.  It's not a fun situation to be in.  Your child is with someone else, and they're artificially asleep.  Subject of another post, maybe later.)  Anyway, we were talking about how, with everything else happening to them, our kids seem to be the happiest, most forgiving, loving kids on the planet.  She said one of her relatives said these kids are born without the "misery" gene.  When I told William, he said the 47th chromosome must hold an extra "love" gene.

Regardless, these kids are happy.  They have fun.  So Aaron will never do advanced algebra.  I can think of a LOT of people who would think that was a blessing.  He has a good quality of life.  He loves.  He is loved.  He has fun toys and people to play with him.  He has nurses that are disappointed when he sleeps and they can't play with him.  He has plenty of food, a warm home, and comfy clothes.  And he doesn't complain about what's for dinner.

However, apparently (and I've discovered, not too uncommon) some medical professionals feel that "mentally retarded" people do not have quality of life.  First of all, "retarded" is a word that now has so many meaning, almost all derogatory, that it long ago gave up it's original definition.  I'm not one to be "politically correct" but please, in the medical field, where it is important to be precise, the term is "developmentally delayed" or "mentally disabled".  But no, this hospital has to call a certain little girl "mentally retarded."

So here's the story:  CHOPs, Children's Hospital of Philadelphia, one of the foremost and best pediatric hospitals in the country, has decided that little Amelia can't have the kidney transplant she needs because she is "mentally retarded."  Her parents say, well, fine, we'll donate a kidney from among the family.  No, that's not good enough.  They refuse to perform the surgery at all.  See, "she is not eligible for the surgery because of her quality of life, because of her mental delays."  Yes, you read that right.  The doctors and hospital won't help because she's not smart enough, and never will be.  You can read the story here, if you'd like.  It made me mad, and would have long before Aaron came along.

There is a petition out on to try to get them to change their minds.  It takes about five seconds to do so.  You can also go to CHOPs facebook page and leave a comment if you wish.  It seems that the court of public opinion has the ability to change minds when it becomes loud enough.  See, hospitals are businesses, and it is not good for business if people don't like them.  Please help this little girl.

Besides, Aaron just laughs at me when I feed the bed (or the floor) instead of him.  (Twice in 24 hours, now.  I'm on a roll.)  Wouldn't it be nice to be surrounded by people who reacted that way when you screwed up?

1 comment:

  1. Thanks for sharing this, I've signed the petition. I can hardly believe how ridiculous that situation is. My heart goes out to the family.

    I agree with you that our kiddos are the most special out there. Though Norah has totally different challenges, I can relate about the cheerful bit. Isn't it amazing how these kids can exude such love and sunshine?

    I remember seeing you in passing in the PICU. We'll definitely be there a long time, and while it would be nice to meet, I hope you don't have to go back there again!