No transplant for little girl with mental retardation

[IDrinkaRum]

I put this on my FB wall, but wanted to post it here too.

Blog written by the mother of a child with special needs

This particular post details what happened 2 days ago between the parents, a doctor, and a social worker concerning the transplant options for a little girl with mental retardation.

The doctor (and social worker) both think it's a bad idea because the child is mentally retarded. Also noted in the blog, the family was going to see about family member donating a kidney to the child so they wouldn't be put on the registry for a non-family-member's kidney. The doctor still says no.

I really think this is eugenics at work. Made me sick. My daughter has autism. She is high functioning, but developmentally, she's still between 4-6 years old (she's chronologically 8 years old). This makes me sick.

[Andara Bledin]

What the holy hells does retardation matter in a case of being willing to perform a procedure that will keep someone alive.

That asshole mentioned quality of life... What kind of "quality of life" will she have while she's dying of kidney failure? That's not exactly a gentle way to go.

^-.-^

[LexiaFira]

the doctor said why HE personally did not want to do it. or rather didn't say why, but that he won't do it basically. doesn't make it right.
i don't see anything wrong with the daughter in the fact that she still makes the marks, its just delayed. why is delayed progress bad? at least he expressed that because there is already brain damage he was worried that the medication the daughter would be on would cause more damage. but thats not his decision thats the parents.
unless there is a reason he would be fired or lose his medical license its a personal choice of the dr not wanting to do so. or at least wanting to spare the parents a possible loss? again not his call

[HYHYBT]

I don't think the mom gave the full story, and I believe the parts left out at least *might* make it more reasonable. But looking at what is in there, but passed over: HIV. If you do a transplant, you have to knock out a lot of the body's immune response or it will reject even a great match. HIV means the immune system is already in trouble. How do the drugs for each combine? Also, how likely is it that her brain will indeed be further damaged, by how much, and what would happen then?

A kidney from a dead donor is using a very scarce item with (perhaps; the mom may know more than she's telling, and the doctors surely know more than her) little chance of long-term success, when someone else may have a far better chance from the same kidney. A live donor means putting that person through the (not insubstantial) risks involved in having one removed. Either way, ethics surely requires balancing positives and negatives, not throwing one whole side of the equation in the trash.

No, I'm not saying they're right to deny a transplant. But it's a distinct possibility.

[Sleepwalker]

Nitpick: Eugenics would tend more towards the reproductive side of things. This would lean more towards... I don'teven know. Passive genocide? I can't get the page to load, so reserving judgement for now.

[Sleepwalker]

Oh, whew, that little girl is screwed every which way. Hep C, HIV, AND brain damage?

Part of me is saying, well, it's a family donation, but the other part says, the organ is only the first step and will only last her a few years. And my god, HIV and Hep C on top of a disease that already has damaged her organs and immune system.

Definitely reserving judgement now. The doctor could very well be right, and me and Google aren't going to gainsay him or the mom.

"The most common characteristics include a distinct craniofacial phenotype (microcephaly, micrognathia, short philtrum, prominent glabella, ocular hypertelorism, dysplastic ears and periauricular tags), growth and mental retardation, muscle hypotonia, seizures, and congenital heart defects. Less common characteristics include hypospadias, colobomata of the iris, renal anomalies, and deafness.[6] Antibody deficiencies are also common, including common variable immunodeficiency and IgA deficiency"

[Sleepwalker]

http://www.wolfhirschhorn.org/about-...horn-syndrome/

Prognosis
Infants who have WHS may be stillborn or die in the newborn period and prognosis during the newborn period depends upon what birth defects are present. It has been estimated that approximately 35% of individuals who have WHS die within the first two years of life. Many individuals who have WHS survive to adulthood. Universally, children with WHS have severe or profound developmental retardation, however, there are many affected individuals who are able to walk and some that are able to talk in short sentences. It is evident that many patients seem to proceed farther than was previously thought possible. The actual lifespan for individuals who have WHS is unknown, although there are several individuals who have WHS who are in their 20–40s.

[IDrinkaRum]

Yes, but the doctor, at least according to the blog, is making it sound like he won't do the operation because the girl is mentally retarded. This has some serious consequences. Does this mean all mentally retarded/developmentally delayed/whatever else people will be denied transplants? The mother said she did research. Hers isn't an isolated case. Hospitals are denying transplants to loads of mentally retarded children/people. This makes me

[Andara Bledin]

A live donor means putting that person through the (not insubstantial) risks involved in having one removed.

A family member would be donating the kidney. It would not be "on the market" at all if the girl didn't need it, so it's not taking one away from anyone else.

Also, from what I can gather of their blog, the WHS is the only health issue the child has. I believe the "Hepatitis C" and "HIV" are other reasons for denial of a transplant, and if that is the case, then the whole thing is a load of outdated bullshit, since it's been shown (the report I found was from 2006) that being retarded has no appreciable affect on kidney transplant recipients for acceptance or survivability.

^-.-^

[Nyoibo]

Not that I would disparage the mother, but her blog is not exactly the most unbiased source.

[Lace Neil Singer]

Not that I would disparage the mother, but her blog is not exactly the most unbiased source.

^This. I don't want to seem as tho I'm attacking the mother, but I for one would like to hear the doctor's side of the story too, to get the fullest viewpoint. How many times have those of us who've worked in customer service heard a hysterical complaint from someone who is giving their side of the story in a way that paints them in the best light ever and the person who they're complaining about as the most evil person in the world?

Just reading that account makes me wonder if there's something that the mother's missing out. For one thing, the doctor would be risking his livelihood if he refused the transplant purely under the grounds of a disability; that's against the law.

http://en.wikipedia.org/wiki/America...es_Act_of_1990

While it's entirely possible that people like this exist, who would discriminate against a "mentally retarded" child, it's also possible that there's another reason for disallowing the transplant which the mother has ommitted cuz by doing so, she gets to paint herself as a martyr and win support which she wouldn't get if she told the whole story.

Like I said, I'm not saying the mother is lying or the doctor is innocent. I just like to hear the whole story, preferable from an unbiased source, before I make a judgement.

[bara]

The blog did mention HIV and Hep-C as well but didnt focus on them.
The child suffers from a chromosomal problem, a break down of her genes caused by a reproductive cell failing. That is what caused her mental retardation.
I dont know if that alone is enough to keep her from getting a family transplant. The HIV certainly would but the blog only glances over it. Perhaps its a mistype and she meant to put HPC?

But assuming the girl does have HIV then the last thing she needs is a transplant. When a transplant is done, medications are prescribed to shut down the immune system to keep the body from rejecting the organ. Add that with HIV and before long an infection sets in that cannot be stopped. The doctors have to take that into consideration as well.

If the child does have HIV and Hep-C as well then I do believe that a transplant is a bad idea.

[Sleepwalker]

From rereading the blog post, it seems she does not have HIV or hep c, but that the doctor highlighted the applicable conditions from a list that included the non applicable HIV. Her condition DOES impair immune system function, though. Meh. Not enough information, all we really get is 'mom wants transplant, doc says no'.

I really wonder, though. It kinda looks to me like over intervention. =/ The mom dismissed concerns over further epilepsy and brain damage, despite earlier posts showing that the girl has epilepsy. Yes, quality of life is a separate thing from staying alive. Transplants are harsh, surgical recovery is harsh, transplant medication is harsh, and she'd have to do it all again in less than a decade... assuming a donor could be found. And again before the age most kids go to college. And again after that. This is assuming she is one of the small percentage of kids with her syndrome capable of living to adulthood.

I hate these types of things. Not enough information.

[Ree]

I read and reread it several times.

I agree with Andara's interpretation. From what I am reading, the child does not have HIV or Hepatitis C.
What the mother was saying is that the doctor had a sheet showing the reasons why a transplant could be denied.
Those other 2 conditions were on the list as reasons for a transplant to be denied, but the doctor had highlighted "brain damage" and "Mentally retarded".

In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV.

The sole reason for the denial of the transplant was the fact that the child has developmental delays due to Wolf-Hirschhorn syndrome.

I can understand the hospital's view on this, but as I have said on my Facebook after I read what IDrinkaRum shared on her wall, if this was my child or grandchild, I would fight tooth and nail to keep her alive.

No, the mother isn't objective, and we only have her side in this blog, but I am inclined to believe her on this.

[tabbyblack13]

I want the doctors view on this. If he denies the operation because of her mental retardation then this is where ADA comes into play.

But here is another thing. Her mental retardation is caused by a genetic condition. Does this condition prevent or hinder the transplant from happening? What if because of her DNA she is not a good candidate? Also, why does she need a transplant? Is it because of the WHS? Will it cause her new kidney to fail?

There are a lot of unanswered questions that I have concerning this. I would like them answered before I make any decisions.