Disabled Girl Denied Transplant

LuckyLeprechaun

Story from Yahoo's homepage today, a 3 year old girl with a raare disorder which causes both physical and mental handicaps, is being denied a transplant, even though the kidney she needs is being willingly offered from a family member.

They told the mother that one of their concerns is that her mental retardation may prevent her from being able to diligently take the anti-rejection medication for life.

Thoughts? I am having a bit of a dilemma deciding on this story, because if they try and fail, they're likely to be sued, but it sounds so heartless, especially since the kidney is coming from her own family.

BrettPGH

That's despicable.

I get that the hospital is nervous about a lawsuit. Any hospital is these days. But the family is donating the organ voluntarily. Isn't there something they could sign to the effect of "We understand the risks and go into this of our own free will. We will not hold the hospital liable in case of lapsed medication."

I'm not a big fan of a flat out "no" when we're talking about a person's life.

LuckyLeprechaun

Another complication is that one part of her disorder is a compromised/weak immune system, and the hospital is saying they won't do transplants on anyone with a reduced immune response, so that's another strike against her.

I'm inclined to agree with you Brett, there should be some way the family can get the care and the liability exposure reduced, but this one is tough.

macpatti

Tough one. I'll need to read the article, If the transplant could save her life and the family has a donor, they should be able to pursue the procedure and sign a release. I wouldn't care if my child was mentally retarded or had physical deformities. I'd want to save his her life it there's a chance. It's a risk, but if the parents are willing to take it, they should be allowed to do so.

mikajoanow

Chrissy Rivera posted a blog entry last week that described an encounter she claimed happened at The Children's Hospital. She and her husband were 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. Amelia will need a transplant in six months to a year.

Chrissy Rivera, 36, wrote that a doctor, whom she did not name, told her and her husband 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."

Joe Rivera said he was left thunderstruck.

"It just felt like that you were punched in the gut," he told the AP. "It was mind blowing how people think these days."

But he said that the experience was not necessarily indicative of the treatment they've gotten from the hospital.


http://www.ajc.com/health/nj-disabled-girls-parents-1306442.html

WOW They need to go over this guys head.

macpatti

I'm hoping either the parents misunderstood or that doctor does not have the authority to speak on the hospital's behalf on this one. Denying a transplant to someone just because they're mentally retarded is just wrong. I'm hoping there's more to the story.

ATT949

We still have some freedoms left in the US concerning with whom we do business.

The hospital is exercising their right to choose with whom they do business. For whatever reason, they've decided to not perform the transplant. It's that simple.

In 2001, my wife had a metastasis of breast cancer. I faxed her medical records to MD Anderson to see if they would help her. They refused. I didn't like it but that was their decision.

Wanna know a good one — we have no legal right for the police to "protect and defend" us. Sure we pay taxes but public services such as police, firefighter, etc. are under no obligation to help. Just ask the family of the man who drown in San Francisco Bay last year while police and firefighters stood and watched.

Regmama

There are two sides to the story, I'm sure. My step-dad had a kidney transplant and he and his donor (his son) needed to be 100% illness free, as in, not even the common cold, before they would do the transplant. There are a lot of things to be done before a transplant is given the green light. From the beginning process until the transplant, it took almost a year and a half for my step dad with one set back along the way (a gall stone that had to be removed). We don't know the whole story. This is a mom fighting for her daughter's life, and just ask any parent, they would do whatever they could for their child's life, even if it's omiting information. I don't blame the mom, but I'm sure there's more we're not being told. Then again, there are always doctors who have agendas too.