Special-Needs Girl Denied Kidney Transplant in Phila.

[Myriad]

What is not clear here is how profoundly or not this child is brain damaged. Are people suggesting it would have been ethical to give Terry Shiavo a kidney transplant? OTOH, at the end of the personal anecdote the mother says the child is developmentally delayed, quite a different scenario.

I need to know how brain damaged before I'm willing to condemn the medical exclusion. Yes there are times where it is a judgement call, but there are times when a medical decision is not agreed with by parents in denial that their brain dead child will never improve.

It depends on how severe this child is affected. Also, hep C is mentioned. That could mean a liver transplant would also be needed in the future. Livers and kidneys are both in short supply. Sometimes that has to be taken into account and yes, we make judgements about quality of life.

Then there is the problem of the parents not hearing everything the physicians said. A parent might hear the mental disability when the doctor also said the immunpsuppressing drugs a kidney transplant entails could worsen the hep C.

Amelia doesn't have hepatitis C. That was only mentioned as something else that was on the doctor's printed lists of contraindications, along with AIDS.

How brain damaged (translating to, what she will and will not be able to learn) is something the doctors don't (and can't) really know at this point. http://ghr.nlm.nih.gov/condition/wolf-hirschhorn-syndrome: "Intellectual disability ranges from mild to severe... Compared to people with other forms of intellectual disability, their socialization skills are strong, while verbal communication and language skills tend to be weaker."

My parents were told by doctors that my brother would never walk or talk. Fortunately they were in denial, so he got to live to do things like this.

Respectfully,
Myriad

 

[Skeptic Ginger]

Amelia doesn't have hepatitis C. That was only mentioned as something else that was on the doctor's printed lists of contraindications, along with AIDS.

How brain damaged (translating to, what she will and will not be able to learn) is something the doctors don't (and can't) really know at this point. http://ghr.nlm.nih.gov/condition/wolf-hirschhorn-syndrome: "Intellectual disability ranges from mild to severe... Compared to people with other forms of intellectual disability, their socialization skills are strong, while verbal communication and language skills tend to be weaker."

My parents were told by doctors that my brother would never walk or talk. Fortunately they were in denial, so he got to live to do things like this.

Respectfully,
Myriad

I'm not suggesting a mildly disabled child doesn't deserve medical care. I am, however, suggesting parents don't always hear what the medical providers tell them. I just wouldn't be so quick to see outrage here without more facts. What we have is the parents' perception and not the true medical facts, including what the "list" even means. Just putting hep C on the list, for example, one would need to know the details, not just a condition on a list. Hep C sufferers get liver transplants quite often.

 

[Myriad]

I'm afraid I'm not. It's not all that long since they were still called the M word as a matter of course.

"Moron" and "idiot" started out as neutral, clinical, non-insulting technical terms for people of certain ranges of intelligence. As an alternative to whatever other terms were in use at the time.

"Retarded" also started out that way. It originally meant (and still means) "slowed down." Thus it was a more refined way of meaning "slow," implying just developing certain capabilities later than normal. ("Normal," by the way, was once a good thing to be.) "Mentally retarded" was the politically correct, clinically neutral technical term in the 60s and 70s.

(However, "Retard" as a noun appeared later, and was never other than an insult.)

"Developmentally disabled" has a few years left to it, after which it will become an insult too. It appears that "intellectually delayed" is poised to take its place when necessary, despite being identical in construction and meaning to "mentally retarded."

The evolution of such words and phrases into crude insults is inevitable, regardless of their intention or construction, due to their meanings. One learns not to sweat the small stuff.

Respectfully,
Myriad

 

[Architect]

"Moron" and "idiot" started out as neutral, clinical, non-insulting technical terms for people of certain ranges of intelligence. As an alternative to whatever other terms were in use at the time.

Erm, no, Moron is not the "M" word in question here.

 

[joesixpack]

I say that a lot of the time this branding is unfairly placed, especially when it is an issue of being on a wait list ( which this is not, but it is a broad reaching topic. .)

It is more of a case of " With this organ, person A could lead a normal healthy life and be able to make the most of the organ. But person B, will lead a less normal, healthy life and not gain as much of a benefit from the organ." if you have to give one person the organ, it simply makes sense to make it the person that will get the most benefit out of it.

In fact i find in general, the attitude to things like this is " This person already has a **** life, why not give them something good?" and that is a nice standpoint to take. But when we have a limited supply of organs, the person who can make the best use of them, should be the person getting them.

It would be like if one was in charge of designating which troops get which weapons. Are you going to give a state of the art , costly, effective sniper rifle to the gent who can barely hit a target, or the gent who can hit the bullseye 9/10 times?

I understand what you're saying, and I think what you are describing is a matter of triage. In this case she is being denied the surgery when a family member is willing to be the donor. I think this changes the issue a bit (though I can see that there are still triage issues involved)

 

[Myriad]

Fascinating thread. I had heard that Downs syndrome people were denied transplants but I'd thought that was because of "physiological" complications arising from their condition, which I could understand. So I am surprised to learn that it because of an unfounded discrimination.

Yeah, certain physiological complications arising from their condition is why so many of them need heart transplants in the first place.

But, for cadaver organs, I don't have any alternative system for making the allocation system fair, or even any more fair than it is. It might seem that Down's syndrome guys should "have a chance" in the death lottery for donated hearts. And I wouldn't object to that. But if a death lottery is the best we can do (and it appears to be), is it any more cruel and arbitrary to go by the genetic lottery they've already lost? Starting with a completely random lottery, would it make it any more unfair to draw the lots in order of the day of the week the patients were born, with Saturdays being the last drawn and thus never getting transplants? It wouldn't seem to make much difference; one random factor substitutes for another. Is being born with Down's any more arbitrary than being born on a Saturday? I'm still thinking about this issue.

Respectfully,
Myriad

 

[DC]

erm get a second oppinion from a different specialist?
amazing, 20 000 people on the internet think they know better without knowing any details?

 

[joesixpack]

Erm, no, Moron is not the "M" word in question here.

You mean "mongoloid" for downs syndrome, of course.

 

[Myriad]

Erm, no, Moron is not the "M" word in question here.

Mongoloid? I haven't heard that in decades, though it was common enough long ago. Good riddance, but it was never as demeaning to people with Down's as it was to Asians.

Respectfully,
Myriad

 

[Architect]

Still here it here occasionally in older people in lieu of the medical term and much more frequently as an insult....can't abide it myself, used to have a neighbour who's boy had aforementioned DS. Lovely wee chap.

 

[Exitzero]

I am the guardian of a man with Down Syndrome. I've found that the vast majority of people in the medical profession are wonderful, caring people who give him top-notch care. Once in awhile there are those who go above and beyond.
Rarely, but it does happen, are the ones who are decidedly uncomfortable dealing with him. You get the impression that they are wondering how in the world he is allowed to continue taking up space on the planet. I had to admonish an eye doctor once who, once the eye exam was done, refused to acknowledge that my ward was in the room. Really. Wouldn't look at him, wouldn't answer his questions, turned his back when he tried to get his attention. How could I trust that this doctor would give him the best care?

Maybe those who have spoken out and signed the petition don't know the whole story, but I think it is wisest to err on the side of caution. No one wants this child to have surgery that will do her more harm than good, but let's not let this one doctor count her out without giving her a chance. From what I understand, it is extremely rare for a transplant board to go against the lead surgeon. Speaking out will make sure that the hospital over sees the board and that they make a decision based on facts, not on the opinion of the doctor that the child has "no quality of life." A child that he does not know, BTW.

PS, when my ward was born, the life expectancy of someone with Down's was 6 months. His family wrote him off. Told everyone he died and put him in an institution. He's now 61 years old, going strong and an AWESOME guy.

 

[MatildaGage]

Healthcare providers themselves can't publicly comment about specific patients who fail to give written consent, while those same patients are completely free to go to the media and comment about the healthcare providers. They can't defend themselves. By the time the healthcare providers convince the patient to consent, they can defend themselves, but the public's mind is made up. Convenient...

The other thing to keep in mind is organ donation is highly regulated and, IIRC, it's not just up to one doctor.

 

[Exitzero]

That is for folks on the waiting list. They are not asking for her to go on the waiting list. And from what I understand, the parents can go to the transplant board of the hospital, but it is very rare for them to go against the surgeon.

 

[JimBenArm]

When I was growing up, the family in back of us had six boys. Four of them had Down's syndrome, the oldest, a set of identical twins, and their youngest. They were easily the most loving family and the Down's kids were the nicest boys you could ever have known. The idea that because of them having health care denied to them because of them having Down's is disturbing. Who are any of us to decide their lives are less valuable?

 

[MatildaGage]

OK, I missed the living donor thing.

So the issue is the doctor saying no? Can they have it done by a different doctor?

I for one would not even try to force a doctor to do a procedure s/he doesn't want to do.

ETA: Re-read the article. She does not even know if a relative is a suitable donor, she just offers that up as a suggestion in the blog post. The physician told her the committee would meet to discuss it, but if they said no the procedure would not be done at that hospital. That's her appeal option.

A petition to me seems...odd. She is exercising her appeal option. IF that fails then she should seek care elsewhere instead of having it done in a facility, by a medical staff, who does not feel comfortable doing the procedure. IMHO

I've had lots of doctors say no to treating my rare medical condition. Yes it's terribly frustrating and while I'm busily trying to find someone who will say yes I am in danger, but I'm not going to try to force someone to take care of me if they don't feel comfortable, willing and confident in their skill to care for me.

 

[Myriad]

Local (Philadelphia) TV news item now posted here: http://www.nbcphiladelphia.com/news...abled-Child-Transplant-Surgery-137437788.html


At this point, it's not just spreading rumors based on the original blog post; there's been enough interaction between the press and the Riveras that any major missing part of the story (such as, the rather wishful notion that there must be some additional unstated sound medical grounds for the decision, like hepatitis C) could only be a result of deliberate misrepresentation by the Riveras.

It still looks to me like I called it earlier: a doctor who's most likely world-class in his abilities, but with antiquated ideas about who exactly is deserving of those abilities. And (to complete the picture in a way that makes sense), a social worker who practically worships the doctor -- which is understandable -- and expects others to do the same even to the point of agreeing when he says what's best for their daughter is death.

Respectfully,
Myriad

 

[Myriad]

I've had lots of doctors say no to treating my rare medical condition.

Is that because they don't think you're intelligent enough to be worth it?

Sorry to put it like that, but that is the issue we're looking at here.

Respectfully,
Myriad

 

[Exitzero]

...snip... The physician told her the committee would meet to discuss it, but if they said no the procedure would not be done at that hospital. That's her appeal option.

A petition to me seems...odd. She is exercising her appeal option. IF that fails then she should seek care elsewhere instead of having it done in a facility, by a medical staff, who does not feel comfortable doing the procedure. IMHO

I don't think there is any doubt that this surgery will happen, if indeed she is eligible, either at this hospital or another.
The point is to make sure that this never happens to anyone again. These parents are educated, articulate, and have access to the internet. The next set of parents might not. They might take this doctor at his word and just go home and let their baby die. That is a tragedy that we can't let happen. The publicity and public outrage over this will make any hospital or doctor think twice if they have such antiquated ideas. No child should go without medical care because the doctor doesn't like them.

 

[Myriad]

I am the guardian of a man with Down Syndrome. I've found that the vast majority of people in the medical profession are wonderful, caring people who give him top-notch care. Once in awhile there are those who go above and beyond.
Rarely, but it does happen, are the ones who are decidedly uncomfortable dealing with him. You get the impression that they are wondering how in the world he is allowed to continue taking up space on the planet. I had to admonish an eye doctor once who, once the eye exam was done, refused to acknowledge that my ward was in the room. Really. Wouldn't look at him, wouldn't answer his questions, turned his back when he tried to get his attention. How could I trust that this doctor would give him the best care?

Maybe those who have spoken out and signed the petition don't know the whole story, but I think it is wisest to err on the side of caution. No one wants this child to have surgery that will do her more harm than good, but let's not let this one doctor count her out without giving her a chance. From what I understand, it is extremely rare for a transplant board to go against the lead surgeon. Speaking out will make sure that the hospital over sees the board and that they make a decision based on facts, not on the opinion of the doctor that the child has "no quality of life." A child that he does not know, BTW.

PS, when my ward was born, the life expectancy of someone with Down's was 6 months. His family wrote him off. Told everyone he died and put him in an institution. He's now 61 years old, going strong and an AWESOME guy.

Exitzero, welcome to the forum! And thank you for that.

Treasure your awesome guy. I lost my best buddy, a Down syndrome man, less than a month ago. He was only 53. He died suddenly of a cerebral hemorrhage (despite getting excellent medical care). He was also one of our four "challenge" Scouts who made Eagle early last year.

If I'm being a little crankier than usual in this thread, that's one reason why.

Respectfully,
Myriad

 

[Skeptic Ginger]

Is that because they don't think you're intelligent enough to be worth it?

Sorry to put it like that, but that is the issue we're looking at here.

Respectfully,
Myriad

So if that is the issue you want to discuss, how about something to go on besides a less than objective parent's cry?

While this from the Mayo Clinic is very general, it's a start:

Kidney transplant candidates must have adequate heart-lung function and can't have other medical conditions that severely limit life expectancy. You'll work closely with the transplant team to increase the benefit of and reduce the risk of transplant. You must follow a strict medical program before and after surgery that involves taking immunosuppressive medications to ensure good health throughout your life.

People who have an active infection, active cancer, unstable coronary artery disease or other severe medical problems generally aren't candidates for transplant.

Do we know what the life expectancy is for this child's condition?


And this article suggests mental retardation does not disqualify kidney transplantation, all the more reason to think these parents are not hearing what the provider is saying, or this was a poorly informed MD.

Organ transplantation, organ donation and mental retardation

Abstract: We reviewed the literature on accessibility and outcomes of organ transplantation in individuals with mental retardation (MR) and on the prevalence of organ donation in this population. Six centers have published outcome data on renal transplantation in 34 individuals with MR. The one- and three-yr patient survival rates were 100% and 90%, respectively. The studies reported good compliance with post-transplant medications due to consistent support from family members or caregivers. The outcome studies for liver and heart transplantation among these individuals are limited. The literature on organ donation in individuals with MR is mostly concerned with legal issues. The courts generally permit organ donations when such is in the best interests of the donor.

[Intro:]Prior to the 1990s, MR was regarded as a contraindication for solid organ transplant operations (1, 2). The main concern was that people with MR, especially those with severe or profound MR, lacked the necessary cognitive skills to comply with complex post-transplant, anti-rejection medication regimens. As the number of organs available has been insufficient to transplant everyone with a medical need, some authorities felt ethically obligated to allocate organs based on the individual’s quality of life. People with MR were disadvantaged or not considered altogether for transplant operations because they were presumed to have a poor quality of life.