Little girl denied transplant because of mental disability

chelseamb11

http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

Has anybody seen this?  A little girl who needs a kidney transplant is being denied one because she is mentally disabled.  Their reasoning is that she can't have a full quality of life anyway, and because of her disability, she doesn't have the capacity to take care of herself properly and won't be able to take care of herself down the road when her parents are gone and she eventually needs another transplant.


This really makes my skin crawl. What about the oath doctors take to do everything you can to help a patient?  Not to mention, isn't this illegal, considering they are discriminating against her based on a disability?

Mrs.B6302007

I've seen this all over FB.  It's sad if that is indeed what's going on.

crfische

I've seen this linked all over facebook, and I'm kinda with Duds, in that I'd like to hear a rebuttal from the doctors, but I'm pretty sure they can't do this unless there's something else going on that we don't know about.

mica178

A contraindication for organ transplant (since organs are rare and precious) is that the recipient should be deemed capable of taking care of him/herself in the best way possible to reduce risk of organ rejection.  If a patient is deemed unlikely to be able to adhere to the very rigorous routine of antirejection medications and multiple screening appointments and procedures, that person is not given an organ.

It sounds cruel, but again, there are not many donate-able organs around, and there are a lot of people who need organs desperately.  

mica178

Even if the child was getting a donation from a family member, it's never so simple as just the organ.  The responsibility and impact on the medical system doesn't end after the transplant is done, there's a lifetime of expensive medications and tests.  

I get that the family is devastated, but for something so complicated as organ transplantation, you cannot make decisions based on emotions.  Objectivity states that organs are given to people who can take care of the organ.  This little girl cannot and will not be able to do so.  

dumdumfroggie

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:b55b0d9d-f13d-4b7d-8fee-98e9f740b264">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]A contraindication for organ transplant (since organs are rare and precious) is that the recipient should be deemed capable of taking care of him/herself in the best way possible to reduce risk of organ rejection.  If a patient is deemed unlikely to be able to adhere to the very rigorous routine of antirejection medications and multiple screening appointments and procedures, that person is not given an organ. It sounds cruel, but again,<strong> there are not many donate-able organs around, and there are a lot of people who need organs desperately.  </strong>
Posted by mica178[/QUOTE]

<div>Thanks Mica - I didn't want to say it because it does indeed seem cruel, but there are hundreds if not thousands of people waiting to get an organ and unfortunately, most won't get them.  Hospitals/doctors have to go through a lot to decide who will get them.  I wouldn't want to be in their shoes.</div><div>
</div><div>Also, stories like these that get plastered on FB tend to annoy me because they are so one sided.</div>

andy71781

Thank you Mica for saying what I was thinking.

Mrs.B6302007

Excellent info, Mica. 
While it does seem terribly unfair, I figured it was something like that.

Meghannsix

My dad's cousin had a kidney transplant about 17 ish years ago.  His were shot from being a non-compliant diabetic for pretty much his entire life.  He has pretty much every complication you can think of related to diabetes because of this.  He's in his 60's, and now that one donated kidney is starting to fail, and they're combing through the family looking for potential donors.  He's family, but I thought about it, and I will not be seeing if I'm a match.  Sucks and unfortunate, but so are a lot of other things.

emilyinchile

I was going to say what Mica did. If there were enough organs for everyone, then I would say that this girl should get a transplant in order to give her as good a life as possible for as long as possible. But just like alcoholics are sometimes refused transplants because it's decided that they won't care for the new organ, a patient who is unable to care for herself is a lower priority than someone who will do everything possible to really get the most out of receiving a transplant.

And I'm pretty sure that doctors are up to date on what is and isn't illegal for the most part considering their risk of getting sued.

baystateapple

I don't mean to sound like an asshole here, but after reading that article I feel like you can't really get the whole story until you get it from an unbiased observer.  The writer (the mother) is obviously very upset with what happened, but you are only hearing her side, and her view on what took place.  It's possible, of course, that a medical professional "smirked" as she told the mom that her dying child could not have an organ transplant, but I wonder how much of this story is the actual unbiased retelling, and how much is the mom's POV.

And Mica, et al, are correct...there are millions of people who need transplants and so few organs available that cuts are made, and sometimes they seem harsh, but that's how it is.  My aunt died because her liver failed and the doctor told my grandparents that they would never approve a liver transplant for a hypochondriac and a pill-popper.  It's sad, but that's how it is.  Everyone who is rejected for a transplant is someone's mother, father, child, grandparent, aunt, uncle. 

sparent2010

What Mica says makes the most sense to me. It sucks but there are people who die  b/c they either don't qualify for an organ transplant or the time they have to wait since not everyone is an organ donor. Sad? Yes. However, giving everyone an organ that needs one is not feasible.

crfische

All of that makes sense.

Horribly devastating, and as a family, I'm sure I would be heartbroken, but the facts are the facts.

emilyinchile

I also am not sure what the doctor having a Peruvian accent has to do with anything.

I'm not criticizing the mother because she's obviously horribly upset, but if people are going to start talking about discrimination, let's not leave out that part.

ski2play

It is cruel but it does happen.  It is really emotional for the family. 

My dad was an alcoholic who ruined his liver.  They do not give new livers to this type of person.  Very, Very hard to hear when you dad is only 50 years old.  But, with the amount of organs needed it is understandable. 


ETA: not saying that an alcoholic and a mental ill girl are anywhere in the same ballbark, as my dad did what he did to himself, and the girl did not bring this her difficulties on herself.  Just stating that it is an emotional hard pill to swallow for the family.

Anysunrise

Another ditto for Mica. It does make me glad I'm an organ donor though.

mica178

Emily, I had the same thought when I read the mention of the doctor's Peruvian accent.  

chelseamb11

I totally get what you're saying Mica, and I agree.  But her parents are more than willing and ready to give her the meds she needs.  When they pass on, I'm sure a proper caretaker can be established.  There's no way the doctors can judge how well she will be taken care of in 40/50 years.

There is nothing out there (that I can see) from the doctors, but I don't believe it's a hoax because there is a TON of stuff out there on different sites about it, and there's even something on change.org, which is usually pretty correct right? (Correct me if I'm wrong please!)

I just think it's awful to deny this girl something that will save her life because SHE can't take care of herself.  There's plenty of people that can (and will).

SarahPLiz

It is horribly sad. I reposted the story too before I did research. Shame on me. The DD condition that the little girl has can be terminal on its own and usually involves massive seizures. The anti-rejection meds can also cause seizures, which would likely compound resulting in a fatal seizure.

I am guilty of reposting emotionally without all the facts, and I hate when people do that. Shame on me. 

AdeleDazeem

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:657cd438-c595-4ebf-81c9-82e1326aff94">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]I also am not sure what the doctor having a Peruvian accent has to do with anything. I'm not criticizing the mother because she's obviously horribly upset, but if people are going to start talking about discrimination, let's not leave out that part.
Posted by emilyinchile[/QUOTE]

Thank you!  I read her story and I know it's emotionally charged, but there is a lot of danger in coming to conclusions based on one side of the information.  Did things go down that way?  Possibly.  Did she color in a lot what happened?  Given her statements, most definitely.

CHOP is a highly regarded Children's Hospital.  It's heartbreaking and I fully encourage the family to do whatever possible for their child, but my logical brain is siding with Mica on this one.

emilyinchile

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:6c8e7946-aee3-4f08-abf1-734520fd00b4">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]Emily, I had the same thought when I read the mention of the doctor's Peruvian accent.  
Posted by mica178[/QUOTE]

<div>I mean, I try not to assume that mentioning something like that is done in a negative way, but at the same time I just don't see a reason for that detail any more than I see a reason to say your doctor has big boobs or is super short or anything else that has no bearing on the situation.</div>

number55

I think in most transplant cases they have a review board that looks at the best candidates. I can't imagine that this little girl is the only one who has been denied. I think it's relatively easy for parents (regardless of the fact that this child is otherwise disabled) to be outraged that for whatever reason their child didn't meet the criteria. That doesn't negate that the doctors needed to have medical reasoning to make it.  Unless the parents are also doctors, I can't see how they can argue anything other than they don't like it because they didn't get their way.  I don't for a minute think that these doctor's made this decision lightly. 

chelseamb11

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:ac3a490f-dd18-43fc-b300-dcd1a86ad73c">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : No.  Change.org is the Wikipedia of petitions.  Anyone can start a petition there.
Posted by LingerLonger1[/QUOTE]

Good to know, thanks!


What I want to know is if they openly said it's because of her disability.  If they did, that's what bothers me.  If there's other reasons (like mentioned, the rejection med sid effects etc) that makes total sense to me.  But based on what the mom said (which I'd like to know if it's true or not) their basis was her disability, and that's what bugs me.

baystateapple

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:0c8297a9-14fe-4840-a57d-7a691c291501">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : I mean, I try not to assume that mentioning something like that is done in a negative way, but at the same time I just don't see a reason for that detail any more than I see a reason to say your doctor has big boobs or is super short or anything else that has no bearing on the situation.
Posted by emilyinchile[/QUOTE]

She also made references to his "brown, pudgy" face.

There was a LOT of hyperbole in that post.  I realize that the mom is extremely upset, and I'm not saying she shouldn't be, I think ANY parent would be while facing this.  But I can't deny that there's a lot of hyperbole.  She also doesn't ever directly say what the doctor said to her in the first place.  She "repeats" it to him -- "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?” -- but she doesn't directly quote him.  That sent up a red flag for me as well.

I feel heartless pointing these things out. <img src="http://cdn.cl9.vanillaforums.com/downloaded/ver1.0/content/scripts/tinymce/plugins/emotions/images/smiley-embarassed.gif" border="0" alt="Embarassed" title="Embarassed" />  I just...can't take this as fact when only half the story is presented.

dumdumfroggie

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:fef80013-a8d5-407f-bb7b-61d9bda9aad4">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : But isn't it also the possible side effects of the anti-rejection drugs or other medications she might be on?
Posted by edielaura[/QUOTE]

<div>Mica (or someone) can correct me if I'm wrong, but anti-rejection drugs lower the bodies immune system to all kinds of illnesses.  People with downs syndrome are (I believe) already more susceptible to illnesses.  There is a lot more going on than if the child has people that can take care of her with just the issue of the anti-rejection drugs.</div>

Birdie1483

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:e542be89-3fc3-4424-a281-4692fe488285">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : Good to know, thanks!<strong> What I want to know is if they openly said it's because of her disability.  If they did, that's what bothers me</strong>.  If there's other reasons (like mentioned, the rejection med sid effects etc) that makes total sense to me.  But based on what the mom said (which I'd like to know if it's true or not) their basis was her disability, and that's what bugs me.
Posted by chelseamb11[/QUOTE]

This is no different than telling an alcoholic they can't have a liver transplant IMO.

SarahPLiz

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:e542be89-3fc3-4424-a281-4692fe488285">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : Good to know, thanks! What I want to know is if they openly said it's because of her disability.  If they did, that's what bothers me.  If there's other reasons (like mentioned, the rejection med sid effects etc) that makes total sense to me.<strong>  But based on what the mom said (which I'd like to know if it's true or not) their basis was her disability, and that's what bugs me.</strong>
Posted by chelseamb11[/QUOTE]
The mom stated that they talked about the side effects of the anti-rejection meds. What she saw and focused on was the pink highlighted Mental Retardation.<div>
</div><div>Doctors on transplant teams have hard decisions to make. The same organ they give to her could save someone else as well. They have the horrible job of deciding who is more worthy. I don't envy them at all. </div><div>
</div><div>Also, using the hospital resources to perform a contra-indicated transplant (therefore most likely not covered under insurance) just because a family member decided to donate is not an option. Want to see your health care costs skyrocket even more? This is a sure way to do it.</div>

mica178

CHOP is one of the best hospitals in the country and arguably the best children's hospital in the country.  They deal with a lot of organ transplants, so their organ transplant board is experienced at looking at facts objectively.

I have sat in on organ transplant board meetings in my training.  Ugh, would not want to have that be a regular part of my life, it's draining.  Every doctor is there trying to work the system so that his/her patient will get a (desperately needed) transplant.  These boards try to do the best they can with such limited resources.  And they aren't especially cold and calculating.  They do try to work with people to make as many people as possible eligible for transplant because they don't want to take away hope.

I don't doubt that the physician presenting that little girl's case tried really hard to find a way to get her on the transplant list, including telling the board of her parents' willingness to designate future guardians in their living wills for her future medical care.  But that still might not be enough.  The girl had other medical issues that might make taking a lot of the anti-rejection medications impossible.

emilyinchile

Chelsea, even in this completely one-sided blog post, it says that the doctor mentioned the problem with the meds (sorry, this is giant): “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”

“DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”

“Yes, but it is different for her. She is already brain damaged and mentally retarded.”

number55

I think the issue is that the mother can't see past the 'retardation' aspects of her child's medical situation to see clearly that there are other phsiological issues as play. Yes, she is not developmentally where she needs to be emotionally or intellectually. But that isn't the sole reason for the denial. Her disability also causes other issues and those issues made transplantation not an option. I am sure that the mother is very used to people presuming her daughter 'can't' do things (if you read her post on the same website about her daughter's IEP you will see what I mean) but that also means she might not be able to 'see the other side of the coin'.  

edit: what I just bolded was not communicated how I intended it to be. She is not where her peers are developmentally - it has nothing to do with 'needing' to be at a certain level. Sorry.

Mrs.B6302007

In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/wedding-boards_etiquette_little-girl-denied-transplant-because-of-mental-disability?plckFindPostKey=Cat:Wedding%20BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:e542be89-3fc3-4424-a281-4692fe488285">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : Good to know, thanks! What I want to know is if they openly said it's because of her disability.  If they did, that's what bothers me.  If there's other reasons (like mentioned, the rejection med sid effects etc) that makes total sense to me.  But based on what the mom said (which I'd like to know if it's true or not) <strong>their basis was her disability, and that's what bugs me.</strong>
Posted by chelseamb11[/QUOTE]


If she can't take care of herself, administer her own meds, etc. then yeah, it's based on her disability. If would think that if her mental capabilities were higher, maybe there would be different results.