Wednesday, April 01, 2009

Hearts are for Smart People and Livers for Famous Alcoholics

The Special Olympics launched a campaign Tuesday to banish the word "retard." Evidently they want the phrase “mentally retarded” eliminated from state and federal laws that still use that terminology. I understand the rationale behind changing “retarded” to something a bit more benign sounding such as “developmentally challenged” but honestly, it becomes difficult to keep up. I find myself struggling to find the politically correct way to say what we used to just call “slow”.

I am a believer in equal rights for everyone. I remember reading a few years ago that babies with Down Syndrome were not eligible to be placed on the transplant list for a new heart. At first I thought that such blatant discrimination could not be happening. I did a little more research and confirmed that it is true and they are denied new hearts. Up to fifty percent of Down Syndrome babies are born with a congenital heart defect. Of the fifty percent, there will be some that simply will not survive without a new heart.

The thinking in the medical community is that someone with DS will have difficulty keeping up the strict medication regimen required for a transplant patient. The obvious problem with that logic is that we are discussing babies. No baby, regardless of IQ, is responsible for their own medication or changing their own diaper for that matter. It seems to come down to placing more value on the life of one over the other, contingent upon intellect.

Families with Down Syndrome children do not love their babies any less than any other family. How can this be acceptable? In light of this information, is it possible that the battle on terminology is the wrong one to fight?

When I was doing some reading on the subject, I came across this story. This baby, Laith, is not a DS baby but is in need of a transplant. If you believe that we don't have any problems with our health care system this will change your mind. The family's health insurance would not pay for a transplant. They were given the choice of coming up with 1.5 million up front or letting their baby die.

9 comments:

DiPaola Momma said...

insurance companies are the Devil.. realy sometimes I think they are. That is just insane!! A woman can give birth to 8 babies, with fertility assistance, no job, no home, no father.. and the gov can pay for that but a baby, born to a loving family, with insurance can't get their child a heart.. it boggles the mind!!

Sass said...

When my son was having his first open heart surgery, I had to battle with the insurance company to get things paid for.

I wanted to take him to the "utilization review bitch's" office in Bumf*ck, North Dakota and lay him on her desk and say, "Here. This is who you don't care about. This is who may not survive because YOU were told to only pay so much."

Yeah...I had some anger issues I guess.

Sarah @ BecomingSarah.com said...

It's stories like this that make me think that at some point, hospitals and the medical industry at large need to cease being for-profit. As Laith's story demonstrates, you cannot pocket a large profit and provide the best healthcare possible for everyone on our current system. I'm so glad that he's in Pennsylvania waiting for a transplant now.

As for "the R word" campaign, OH MY GOOD LORD, I think I am going to hurt someone. Do you think if they just imposed a mandatory silence on this world that it would help things out? I mean, none of us could ever say anything hurtful ever again.

Political correctness really, REALLY aggravates the Hell out of me.

momwithastethoscope said...

Special Olympics by blacklisting "retard" gives credibility to anyone who has ever used the word as a slur - agree that the energy would be better served on more productive cause.

J. said...

I agree that "retard" is a hurtful word, but there are SO many others.
I'm conflicted over the whole DS babies not getting heart transplants. I think there's something wrong with the organ donor system too. Frankly, I think donation should be automatic unless a person has a specific objection on record.

bernthis said...

well you and I are clearly on the exact same page today. What a fucking disaster. It pains me to read this stuff

kel said...

wow.. I don't even know what to say. I don't understand the whole mentality of insurance companies!

Julia said...

DPM pretty much hit this one out of the park! I cant add much more other than to second her comment. Great post TLB.

Noah's Mommy said...

wow...the things you don't usually read about...I never knew that about DS babies...it's scary..for a country that prides itself on helping their fellow man....we sure are falling down on the job...