Little girl denied transplant because of mental disability

Snippylynn · January 2012

I can understand the emotional turmoil the parents are going through. However, if this little girl is as sick as they are saying, to be blunt, she's going to die young no matter what. Her life is going to be difficult, full of medicines and therapies and all manner of other things, including (probably) hundreds of thousands of dollars worth of medical expenses. While the parents are willing to designate a caretaker for after they are gone.. does that ensure that the girl will be taken care of and not become a burden to the medical system? What if someone says they will take her on, and a couple of years later, they can't take it anymore, or their husband or wife gets seriously ill and needs medical attention all the time?

As much as I know that I am looking at this from the outside, and as a non-parent or even as someone who doesn't want kids I have a different opinion, but wouldn't you want your daughter to have less of that pain and traum? She doesn't understand what's going on, she doesn't understand what she's feeling. Take her home. Give her attention and love throughout her remaining time. Then let her go.

number55 · January 2012

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:eed7a68c-0e7a-42e8-b151-5a5768a608ec">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]I can understand the emotional turmoil the parents are going through. However, if this little girl is as sick as they are saying, to be blunt, <strong>she's going to die young no matter what.</strong> Her life is going to be difficult, full of medicines and therapies and all manner of other things, including (probably) hundreds of thousands of dollars worth of medical expenses. While the parents are willing to designate a caretaker for after they are gone.. does that ensure that the girl will be taken care of and not become a burden to the medical system? What if someone says they will take her on, and a couple of years later, they can't take it anymore, or their husband or wife gets seriously ill and needs medical attention all the time? As much as I know that I am looking at this from the outside, and as a non-parent or even as someone who doesn't want kids I have a different opinion, but wouldn't you want your daughter to have less of that pain and traum? She doesn't understand what's going on, she doesn't understand what she's feeling. Take her home. Give her attention and love throughout her remaining time. Then let her go.
Posted by Snippylynn[/QUOTE]

<div>I hate to say it but I am fairly certain that what I bolded above is a fairly significant issue when transplant boards are debating the case. As someone already mentioned, there aren't many organs out there in relationship to the need, so typically they go to the cases that have the best chance of long term survival and changing the quality of life of the patient. It isn't nice to hear that when it's your kid, but it is still reality.</div><div>
</div><div>Also, life isn't 'fair'. People need to figure that out. </div>

Mrs.B6302007 · January 2012

The mom's blog post is definitely a very emotionally charged one as her (hopefully unintentional) comments about the doctor's ethnicity shows. She just walked out of a meeting where she was told her daughter didn't qualify for a transplant. She has basically been told that there's nothing that can be done for her daughter. She's been handed a death sentence for her child. I can't IMAGINE what that must feel like on top of dealing with the daily care of her special needs daughter. All of that to say, my heart breaks for this woman but there are two sides to every story and we're only hearing one and most definitely a biased one.

This makes me grateful for my daughter's health.

kmmssg · January 2012

One of my DD's and I will most likely need a kidney transplant before we leave this world as we have a hereditary disease from my dad. As soon as I read this my mind was already going in the direction of "but she won't be able to care for herself or the organ..." Then I read Mica's post and felt better.

I lost 2 brothers in 2006. One of them was an alcoholic/addict who had been clean and sober for more than 15 years and was actually being considered for a transplant list for a liver. He fell off the wagon and it was detected in a routine blood test. They dropped him like a hot potato (as they should have) but it was devastating.

As a mom, I feel for these parents as their is no positive solution for their little girl. I can't imagine being in their shoes and how desperate and devastated they must be. I can also understand why their DD was not approved for a transplant. Very sad all the way around for that family.

mica178 · January 2012

One issue with pediatric organ transplant is that when the kid becomes a teenager, a large percentage of them try to refuse to take their medications because their friends don't have to take medications and because of all the medication side effects. Imagine how hard it is to convince a teenager of normal intelligence to bypass the rebellion going through his/her hormone-addled brain.

Now imagine trying to do the same convincing with a mentally retarded teenager.

Now imagaine being the legal guardian of your second cousin twice-removed's mentally retarded, organ transplanted child, and having to try to convince that person to take a medication that makes him/her bloated or nauseated and undergo annual kidney biopsies that hurt, etc.

teralicious · January 2012

I work as a social worker in a hospital where ALOT of transplants take place. The reality of the situation is there are not nearly enough organs to go around for the amount of people that need them. Plus transplants are around 1 million dollars per transplant. Plus you need to have a full-time caregiver 24 hours per day for 2 months after the transplant is given. Then you must be able to take care of yourself and be responsible for taking the medications everyday as directed or the transplant will fail.

Many people (doctors of various specialties, nurses, therapists, social workers) work with the families and patient prior to even considering a transplant to see if they are a good candidate for the procedure. Thera are many tests done on the person physically but also their mental capacity before a transplant. If someone is unable to care for themselves and be responsible to give themselves medications and stick to all of the various rules you must obey after the transplant it will not be successful and will be wasting a precious organ that someone else who is compliant and independent could take care of. So if you have a cognitive delay or a mental illness a transplant is not recommended. Also if you do drugs (IV heroin for example, they often won't transplant you because you are possibly subjecting yourself to the risk of illnesses like HIV that would mess up the transplant) You also have to take into account the person's other medical conditions, not everyone is healthy enough and can take the medication for a transplant due to other medications they are taking.

Is everyone who thinks they deserve a transplant an organ donor? In my opinion if you don't want to give an organ why should you get one. (obviously some people due to medical conditions can't, but if you are able you should)

chelseamb11 · January 2012

Yeah I let my emotions about the situation cloud the facts. I do see the side of the doctors after this discussion. My knee-jerk reaction was that the doctor was being an asshole and his only reasoning was her inability to benefit from it because of her mental state of mind. I hadn't thought of the other people out there who also deserve transplants and that his reasoning probably wasn't to be an asshole or to discriminate against her.

This is why I love discussions on TK. I love how much everyone has to bring to stuff that not everyone else may have thought of.

specialk84 · January 2012

Chelsea, when you read stories like this, do you immediately get worked up about it? Do you stop and think before declaring the doctors assholes?

When I first read the story, I thought, wow, that sucks. Then I thought for a minute and realized the doctors and transplant team had some damn good reasons for refusing to do the transplant. I also recognized the mother was (of course) biased, and her side certainly wasn't the only side.

Elinetrouwt · January 2012

Let this just be a reminder that we should all be organ donors. Don't forget to tell your nearest and dearest, in case they are confronted with one of the most horrible questions we can face.

AllAboutTheBenjamin · January 2012

I agree with what Mica and others have said but I will say this makes me incredibly nervous. My 7 year old cousin has chronic granulomatous disorder (it's an immune system condition) and the only cure is a bone marrow transplant.

He's been evaluated for autism and his parents say he isn't autistic but he definitely is a lot different from other kids his age. There's something going on with him they haven't figured out yet - which is a whole 'nother issue - but just the idea that he could be denied a life saving bone marrow transplant if he needs one someday kind of makes me sick.

Stackeye210 · January 2012

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:ba88089f-0d29-43b0-8526-5e7d26c218e4">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]Let this just be a reminder that we should all be organ donors. Don't forget to tell your nearest and dearest, in case they are confronted with one of the most horrible questions we can face.
Posted by Elinetrouwt[/QUOTE]

<div>Please don't tell me what to do with my body. Thanks. </div>

adamar15 · January 2012

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 BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:ba88089f-0d29-43b0-8526-5e7d26c218e4">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]Let this just be a reminder that we should all be organ donors. Don't forget to tell your nearest and dearest, in case they are confronted with one of the most horrible questions we can face.
Posted by Elinetrouwt[/QUOTE]

Uh, personal choice anyone?

J&K10910 · January 2012

Well, since Elinetrouwt told me too, I guess I'm going to go be an organ donor.

While it sucks, I support the doctors and review board. The regulations are there for a reason, and I'm sad for her, but it's for the best of all. I don't find it to be much different than an alcoholic being told he can't have a new liver because he'll just drink it to death.

I can also understand the mom's responses, coming from pure emotion, and while I don't support the things she's saying, I think I would likely be in a similar state of mind if I were in her shoes, and it must be incredibly hard for her.

andy71781 · January 2012

Can I ask a question here....is there any good reason NOT to be an organ donor? Is is against religious beliefs?

AllAboutTheBenjamin · January 2012

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:9bf02524-fbec-4145-bb72-2a0a459a5427">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]Can I ask a question here....is there any good reason NOT to be an organ donor? Is is against religious beliefs?
Posted by andy71781[/QUOTE]

The only one I can see as kind of being legit is the fear that if you suffer an accident and get into a hospital, that the doctors won't try "everything they can" to save you once they find out you're an organ donor. I don't really think that's true, though. There might be some doctors out there who suck that much but I choose to think they are few and far between. I understand that fear, though. Kinda freaky to think about.

Some people say they don't want their body to get cut up after they die, which I don't really get at all. You're dead. Who cares. Maybe your body won't get "cut up" but you're going to rot away anyway. So what.

There might be some religious beliefs against it but I am not sure what religion that is. My own pastor is a liver recipient, so yeah, it's definitely not something Christians are against.

adamar15 · January 2012

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 BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:9bf02524-fbec-4145-bb72-2a0a459a5427">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]Can I ask a question here....is there any good reason NOT to be an organ donor? Is is against religious beliefs?
Posted by andy71781[/QUOTE]

Some of them, yes. I mean of course it's a good thing to be, but it's not something that should be forced on anyone that doesn't want to be an organ donor.

J&K10910 · January 2012

If you're a smoker though, Edie, some of your organs can still be used, I think. They test them before they go plopping them into someone else.

jessicabessica · January 2012

I agree that elinetrouwt was a little preachy, but I don't really see how talking about the fact that people should generally be organ donors is off-topic from a conversation about how selective transplant review boards are and why they are that way.

Kate61487 · January 2012

AATB - is a bone marrow transplant subject to the same scrutinies/review board as an organ transplant?

Nickivegan · January 2012

I have a few things to add, because I was upset- at first. But then I started discussing this with Ell. 1) my uncle is "retarded". He lives in a group home, with 5 others with mental handicaps. One of the guys has no family left. None. He out lived them all, well, the ones who actually cared for him. The group home helps him with his medications and daily routines. It can very difficult dealing with normal routines for the housemates, let alone siezure meds. Some of the group home workers are trained, others are college students with a part-time job. So I actually understand the doctors point of view. 2) thanks Mica, for adding what you did. 3) I didn't see the accent or "brown pudgy face" comments as negative at first, just details. But now I get that, too.

AllAboutTheBenjamin · January 2012

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:29a53bce-6ff3-4eb1-89aa-6d9e1b54526e">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : Oh I'm glad. I think I do want to donate but I don't want someone getting cancer because I smoke.
Posted by edielaura[/QUOTE]

...But aren't you Jewish? I thought you just said Jews were supposed to be buried with all their parts?

jessicabessica · January 2012

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:bce29824-f54f-431b-a347-b2f27f13bc2c">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : I don't think anyone said it was off topic. Did I miss something?
Posted by rachers1017[/QUOTE]

<div>A few of the responses to eline--at least edie and crfb.</div><div>
</div>

AllAboutTheBenjamin · January 2012

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:6ed30694-1527-447f-b9e5-e4d223dd873b">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]AATB - is a bone marrow transplant subject to the same scrutinies/review board as an organ transplant?
Posted by Kate61487[/QUOTE]

I honestly don't know.

jessicabessica · January 2012

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:59319c6d-86ef-4694-8a2f-4e871c2206bf">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : ...But aren't you Jewish? I thought you just said Jews were supposed to be buried with all their parts?
Posted by AllAboutTheBenjamin[/QUOTE]

<div>There's an overriding principle in Judaism that saving a life is above all else, so many Jewish people are ok with donating their organs. </div><div>
</div><div>ETA: I wasn't meaning to speak for Edie or suggest why she would donate or not, just elaborate on the general view.</div>

AllAboutTheBenjamin · January 2012

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:238f6999-3479-426e-b477-5eba6e641bda">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : There's an overriding principle in Judaism that saving a life is above all else, so many Jewish people are ok with donating their organs. ETA: I wasn't meaning to speak for Edie or suggest why she would donate or not, just elaborate on the general view.
Posted by jessicabessica[/QUOTE]

Ah that makes sense, cool cool.

chelseamb11 · January 2012

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:6ed30694-1527-447f-b9e5-e4d223dd873b">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]AATB - is a bone marrow transplant subject to the same scrutinies/review board as an organ transplant?
Posted by Kate61487[/QUOTE]

My guess would be no because bone marrow regenerates correct? Granted, a liver does too. I think bone marrow is closer to the blood department than the organ department. I might be wrong though.

aragx6 · January 2012

I would imagine Jehovah's Witnesses can't be donors given that they can't get blood transfusions, but I'm not familiar enough to be certain.

dumdumfroggie · January 2012

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:7e26804a-e0df-4080-9a32-d8366dc6e4c5">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]I would imagine Jehovah's Witnesses can't be donors given that they can't get blood transfusions, but I'm not familiar enough to be certain.
Posted by aragx6[/QUOTE]

<div>They can be donors, but in order to receive an organ, all of the blood is to be drained from it first. At least that's my understanding of the rule.</div>

J&K10910 · January 2012

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:12945c81-629c-4242-88d9-f11340804832">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]I have a few things to add, because I was upset- at first. But then I started discussing this with Ell. 1) my uncle is "retarded". He lives in a group home, with 5 others with mental handicaps. One of the guys has no family left. None. He out lived them all, well, the ones who actually cared for him. The group home helps him with his medications and daily routines. It can very difficult dealing with normal routines for the housemates, let alone siezure meds.<strong> Some of the group home workers are trained, others are college students with a part-time job.</strong> So I actually understand the doctors point of view. 2) thanks Mica, for adding what you did. 3) I didn't see the accent or "brown pudgy face" comments as negative at first, just details. But now I get that, too.
Posted by Nickivegan[/QUOTE]

Correct me if I'm wrong, but it sounds like you're implying the college students aren't trained. If they're administering medications, they damn well better be trained. Just because they're working part time while in college doesn't mean they aren't trained. Of course they are. They don't just throw people into the group homes and say "Ok, good luck!"

Kate61487 · January 2012

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 BoardsForum:9Discussion:97ace936-0e90-4bd7-be01-7f39f1d54593Post:134bc3f1-8b32-4344-b204-43321639c417">Re: Little girl denied transplant because of mental disability</a>:
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : My guess would be no because bone marrow regenerates correct? Granted, a liver does too. <strong>I think bone marrow is closer to the blood department than the organ department.</strong> I might be wrong though.
Posted by chelseamb11[/QUOTE]

This is kind of what I was thinking. I know it's more complicated than blood; finding the right match and making sure it's not rejected. But I'm an engineer soooo I honestly have no idea.

Little girl denied transplant because of mental disability

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