Parents say disabled NJ girl was denied transplant

[Judi Lynn]

Parents say disabled NJ girl was denied transplant
KEVIN BEGOS, Associated Press, MATT MOORE, Associated Press
Updated 10:03 p.m., Tuesday, January 17, 2012

PHILADELPHIA (AP) — The parents of a 3-year-old girl say she's being denied a kidney transplant because of her mental disabilities, but experts caution the situation may be much more complex.

Chrissy Rivera, who lives in New Jersey, last week posted a blog entry that described an encounter she claimed happened at The Children's Hospital of Philadelphia. She said she was there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities.

Rivera wrote that a doctor, whom she did not name, told her and her husband, Joe Rivera, that Amelia wouldn't be eligible for a transplant because of her quality of life and her mental condition.

"I put my hand up. 'Stop talking for a minute. Did you just say that Amelia shouldn't have the transplant done because she is mentally retarded. I am confused. Did you really just say that?'" she wrote. "I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded."

More:
http://www.chron.com/news/article/Parents-say-disabled-NJ-girl-was-denied-transplant-2590462.php

[mucifer]

1. I know that severely delayed children often do not get transplants.

[midnight]

2. I wonder what Americans disabilities act would say about this discrimination....

Because I'm sure that hospital receives federal dollars....

[Justice wanted]

3. and we still can't call the insurance industry a death panel.

[Snake Alchemist]

9. That is true, but in this case it was a hospital board. nt

[Justice wanted]

10. BUT I bet that hospital board is basically muppets for the insurance companies.

[Snake Alchemist]

12. If insurance isn't paying for the procedure, what would they care?

Unfortunately, there is always going to be some sort of triage with limited resources.

[X_Digger]

4. If "Wolf-Hirschhorn syndrome" has other physical impacts..

.. transplant boards are likely to take that into consideration (whether or not they have mental impacts).

I know nothing of the syndrome, but I have had family on a transplant list- the board routinely takes into account other chronic or genetic disorders. My family member was tested for a whole battery of genetic tests because there are a few genetic disorders in the extended family tree.

[rocktivity]

8. Accrording to Wolfhirschhorn.org

Heart defects are one of the main symptoms. Maybe the doctors are concerned that the child wouldn't survive a transplant, or that her body would be more likely to reject it.

http://wolfhirschhorn.org

rocktivity

[alp227]

5. To avoid a Godwin, this borders on eugenics.

And there are prisoners getting transplants. Given how many people need organ transplants, disabled or not, it's really really tough to make a real judgment about this without sounding bigoted.

[MADem]

6. It's obvious that these boards 'prioritize' or 'triage' their patients.

They seem to do it based on age and medical health and patient lifestyle, but I would bet that if you could afford to put a wing on a hospital and buy a lot of specialized equipment, they'd be persuaded to find you a body part even if you were a heroin addict or a habitual drunk or 96 years old. Money talks, and all that.

And they will keep doing it due to shortage of spare parts, or until we learn to 'grow our own' via cloning the parts.

It stinks because it's unfair.

[cstanleytech]

7. Well its the old saying though of no one said life was fair.

But that aside this is a prime example of why there needs to be more money spent on developing the ability to clone organs.

[X_Digger]

13. Well, another way to improve your chances is like Steve Jobs did..

.. buy a house in every transplant district, register on multiple lists, and have a jet on standby.

[tammywammy]

14. I don't think he had to buy a house

He just had to get evaluated at different transplant districts in order to get on multiple lists. At the time of his transplant the list that controlled Tennessee only had a 4 month wait for a liver.

Obviously, if you have money you can fly around the country and get evaluated and be place on multiple lists. Then of course you'd have the ability to get to wherever the organ is when one becomes available.

[Scairp]

15. I don't begrudge him

I think anyone of us would, if we had the money, do whatever was necessary to save our own lives, extend our lives, if we were dying of something treatable. He had young children, and I'm quite sure they are happy they had their father around as long as they did, as is his wife and other family and close friends. And as long as no one was harmed or "bumped down" the list for a transplant because he had money and they didn't, then I don't see the problem. In this case, I just don't know. I do know that transplant recipients are screened for many things, including whether or not the organ is going to someone who will take good care of themselves and whether they have any underlying, untreatable conditions that make a transplanted organ unsuitable, that they won't survive any longer with a transplant because of that underlying condition than they would without a transplant.

[LeftyMom]

17. I don't think I'd take an organ to buy a little time, knowing my larger diagnosis was terminal.

Sure, everybody wants a little more time if they can maintain some quality of life, but there's an organ shortage. Gaming the system to jump the transplant list, knowing you'll be buried with your shiny new organ fairly soon means that somebody else might die while they wait, who might otherwise have lived.

I couldn't do it, and I've got a young child myself. I wouldn't want that to be the example I left for him to remember me by. Anyhow, the person who might have got that liver almost certainly has people who love them too.

[The Wizard]

11. The Teahadists

are already saying she's a victim of Obama's death panels.

[LeftyMom]

16. There are never enough organs. I hope nobody who isn't a registered donor is complaining.

There are a lot of problems with the way that transplantation lists are administered (I have personally complained about them before, having a few relatives with heath problems that might put them on transplant lists someday,) but as long as there's a shortage of organs, not everybody who needs one will get one. Denying somebody is always going to seem unjust, because everybody deserves a shot at life, but in a scarcity somebody's always going to have to do the cold equations and determine who's got the best chance of a long healthy life with that new organ.

There's always a particular shortage of organs for children, because thankfully children tend not to die and leave organs lying about. That's not likely to change either, especially as safety advances mean that otherwise healthy children aren't dying in preventable accidents at nearly the rate they used to, reducing the donor pool.