Do you think that a child should be denied a organ transplant because they are mentally disabled?

Amy - posted on 01/17/2012 ( 13 moms have responded )




Here is the link to the story, a PA hospital is refusing to do a kidney transplant for a little girl, according to her mother because she is mentally disabled. Without knowing all the details because the hospital can not defend their decision without violating HIPPA, do you agree that someone should be denied because of their mental capabilities?


Mary - posted on 01/18/2012




In answer to the OP - NO, someone should not be denied an organ transplant based solely on their mental capacity.

However, I highly doubt that this is the case in this situation. We will never get an unbiased insight into all of the possible health issues that Wolf-Hischhorn Syndrome has meant for this individual little girl, but the fact that she is in need of kidney transplant strongly suggests to me that she does fall on the more severe side of the spectrum of the symptoms that this syndrome can present (i.e. seizures, heart defects, immunodeficiency disorders). If, as I suspect, this little girl does have these other complications, performing a kidney transplant would not only be futile, but unnecessarily cruel. Performing a transplant on a person with any or all of these other underlying issues that would strongly negate the chance of a successful outcome would be medically unethical on the part of CHOP, despite parental permission and desire.

I found out a little bit about her family on an WHS family support site. The mother appears to feel very passionately about remaining hopeful and positive: "...but I see a lot of the WHS children on the blog and feel such hope for the future. If so many medical professionals can be wrong about so many things with this syndrome, then I know never to believe any negative information I am told about her syndrome."

While I can admire such optimism, and being a strong advocate for your child, I also know that there are times when our emotions cloud not only our judgement, but also the ability to accept reality. I suspect that this is the case here. It sounds like from the get-go, this was a momma-on-mission who may have gotten a little too caught up in the "us vs them" game to fully acknowledge the reality of her child's prognosis.

CHOP is a highly respected institution, and is well-known for performing innovative and cutting-edge procedures on hundreds of children who are otherwise viewed as hopeless. They simply are not the type of place to refuse a transplant based solely on mental disability. However, as the article points out, HIPPA prevents the hospital from speaking out about anything regarding this mother's version of what transpired. In short, she can make all of the allegations she wants, and they are unable to publicly refute them.

My take on this is that this is a desperate, heartbroken mother who is unable at this point to accept the inevitable future loss of her child, and she is grasping at straws to deny it.

Kellie - posted on 01/19/2012




"but it is NOT the doctor's choice, right, or responsibility to deny a family a transplant procedure if the organ is donated from a family member"

Actually, as the person responsible for doing the procedure, the Doctor has EVERY right to say no, we cannot proceed with the operation, ESPECIALLY if the operation is likely to end in death or more suffering on the patients behalf. They took an oath and they have a duty of care to their patient.

Becky - posted on 01/17/2012




If the reason she is being denied is because of her mental disability, then that is absolutely horrible. But, from the article, it sounds like this disorder could cause other health problems - like a weakened immune system or heart problems - that make a transplant very risky or unlikely to suceed. So without knowing the real reason the hospital is not recommending the transplant, it's hard to really judge. I lean towards thinking that since there is a family donor and she won't be taking a kidney from the registry, it should just be done. On the other hand, if it was not successful or she wasn't healthy enough to survive the transplant, I could see the family possibly then claiming they weren't fully informed of the risks and trying to sue. So I can sort of see the hospital's position.

[deleted account]

It's hard to know without more information, but it sounds like the prognosis for this girl is dire anyway and I'm guessing that's the real reason for the denial of the transplant. Honestly, they can always find another hospital if another hospital will take her.

I don't think someone should be denied care because of mental disabilities in general; however, I think in most cases you would need to look at the individual circumstances.


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Kelina - posted on 01/20/2012




I can sort of understand denying a transplant on that basis. That transplant list is a mile long. Why should someone who could go on living a moderately normal life afterwards possibly die because someone who is going to live to need another transplant 6-12 years down the road, and may come out of the procedure even more helpless than before needs one as well. While I don't think that they should be denied the transplant if someone in the family is willing to donate, it makes me think that there's probably more reason than just the mental retardation as well. If they didn't have to take an organ away from someone else there should be no issue at all with the transplant but form other things i've read it's a dangerous procedure and because of her condition she would more likely than not NOT come out of it the same as she went in,(not in a positive way) and she's already a highly special needs child. I know that if it were(hypothetically) between my son and a child like her, I'd fight my ass off to get him the trnasplant before her as would many many others. Were it a decision between my son and another child just like him, I would defer to the waiting list. I can understand how heartwrenching it must be for this woman who spent nine months envisioning a bright, happy healthy baby, and then the last 3 years caring for and loving her daughter just as much to accept the fact that her daughter is going to die, but I don't think that putting her through major amounts of pain and medication are a good choice for a child. She should be able to live out what time she has as the happy little girl she is not a sick one whose life is prolonged because her mother can't bear to let her go. I want to believe that in that same situation, that would be the choice I'd make. Children are a gift for however long we have them and sometimes that's less than we'd like.

Deborah - posted on 01/19/2012




This is true, Becky, but as I said in my first post, the doctor has NO right to Deny the surgery based on the child's mental capacity.

If the surgery is 'useless' because the child cannot take the proper medications, if the risks are too great...reasons like that are different. I understand we're hearing one side, and don't have the documents in front of us, but based on what this woman is saying, it IS wrong for a doctor to deny a child a transplant because of their mental capacity. Of course there is the possibility that this mother is too 'involved' to say the medically-relevant reasons so everyone takes her side, but listing 'mental retardation' as a valid reason for denial of a procedure shouldn't be allowed, particularly in the case of a family-donation.

If there are other reasons, okay, fine, the Doctor is in the right that the surgery shouldn't be done.

Mental retardation is NOT valid and should not be relevant.

Becky - posted on 01/19/2012




But Deborah, we are only hearing the mother's side, which, in her desperation to save her child, may be a little (or a lot) skewed from what the dr. actually said. We know what the mother heard, but we do not know the hospital's actual reasons for denying the transplant. Yes, it would be horrible, and IMO, unethical to deny the transplant based solely on her mental status. But we don't know for a fact that that has actually happened. There are a lot of other symptoms of this disease that could make a transplant very risky or unlikely to work.

Deborah - posted on 01/19/2012




I understand your point but the doctor did not recommend the surgery based on her mental status as 'mentally retarded', which has NOTHING to do with the safety of the child or the parent.... if the doctor listed valid medical reasons, then they would be valid.

Deborah - posted on 01/19/2012




I Think this story is absolute bull-hockey. I can understand some debate about this kind of child being put on a transplant list, I won't argue that point, because there are far too many, but if a parent or a family member want to donate their own organ to the child, the only thing that should stand in the way are the chances of it being successful, including the drug treatments the child will have to receive after the surgery. IF the drugs that will allow her body to use the new organ will harm her, I can understand some hesitation on this decision but it is NOT the doctor's choice, right, or responsibility to deny a family a transplant procedure if the organ is donated from a family member. If the family is willing to take the risks for the surgery, if they are willing to test fate and find out what will happen if their child takes the drugs necessary, then the doctor has no involvement in that decision. It is his responsibility to make sure the family is fully informed about the risks to BOTH patients, but he has no right to recommend a denial of the procedure based on the child's mental capacity.

Allison - posted on 01/19/2012




i think there is more to what that doctor said than what has been revealed. i have an impossible time believing that a doctor said that was the only or main reason if even the reason the girl was denied. i think the mother focused on the mental retardation and missed if not completely ignored every other/actual reason they told her they couldnt do the surgery.

i think the doctor was probably prepairing the parents for the road ahead and she heard we cannot do the surgery..., because... , her mental retardation...

what he probably said was more along the lines of...

" we cannot do the surgery because the risk to her life/shes unlikely to survive. the organ (ethically and logicly) needs to go to a child who will make the most/has the best opportunity with it. and even with the transplant her life expectancy is grim, and her quality would not be greatly or even notably improved with the transplant. you need to be prepared for the road ahead because of her retardation she cannot communicate when it hurts or when she doesnt feel right/weak(something along these lines)"

so as i understood when i read the article the little girl has out lived her life expectancy but her quality of life is not good nor would it improve by much if at all for a long period of time if she had the transplant.

i agree with the hospitals decision however if that was the actual reason they denied her then i would not i would be horrified and disgusted but i dont believe at all that was what happened. but it sure sounds good dont it. i think this is partially what the mother heard in her heartbreak and partially a scare/guilt tactic for the hospital. however like i said i dont think thats what went down i think thats just what she took out of it

Jane - posted on 01/17/2012




In a perfect world this sort of thing would never happen. Unfortunately, this is not a perfect world so folks with money and folks with more "value" to society do get things that others do not. On paper we have rules against this sort of discrimination but you have to prove it before anything can be done. But if you DO prove it then the law forbids it.

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