Hospital denies life saving transplant to child because of special needs

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My apologies if I offend, but I couldn’t sit by without posting my experience. I am the mother of a child with special needs (autism spectrum). Aside from minor medical problems, this child’s disability was developmental. My child has also been treated at the same medical facility (Children’s Hospital of Phila., which everyone refers to as CHoP) as Amelia.

When first diagnosed, my son had severe developmental delays. We were told that he would, in all likelihood, live an independent life. We were told to start planning to support him (and consider an institution) for the rest of his life. At the same time, many people suggested that it would be a waste of our time, money and resources to seek aggressive treatment for him. Why? Because statistics were not on his side. Better to save up for his lifetime care than to seek therapies that would not significantly change his life.

Glad we didn’t listen to that advice. We paid out of our pocket for therapies that were denied him. God bless my husband for allowing me to set aside all other priorities to help our son (he’s an only child, so I was not withholding care from other family members). Now, he is a delightful, mainstreamed third grader who is excited to receive his First Holy Communion in April (our church administers the sacrament in third grade).

My point–I believe this happened to Amelia’s family because I have received similar advice from professionals at the same hospital. My son’s future quality of life was not worth the money and effort required for what was to be little reward. So sad.

Quite frankly, I am a bit jealous of Amelia. Do you know why? Because she will go to Heaven and see God. She is living a blessed life. I only hope her prayers for those around her who refuse her care will be enough to get them to Heaven.
 
90Domer said:
My apologies if I offend, but I couldn’t sit by without posting my experience. I am the mother of a child with special needs (autism spectrum). Aside from minor medical problems, this child’s disability was developmental. My child has also been treated at the same medical facility (Children’s Hospital of Phila., which everyone refers to as CHoP) as Amelia.

When first diagnosed, my son had severe developmental delays. We were told that he would, in all likelihood, live an independent life. We were told to start planning to support him (and consider an institution) for the rest of his life. At the same time, many people suggested that it would be a waste of our time, money and resources to seek aggressive treatment for him. Why? Because statistics were not on his side. Better to save up for his lifetime care than to seek therapies that would not significantly change his life…
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We went through a similar situation with our son. He was diagnosed with drug resistant Myoclonic astatic epilepsy. Given his rate of decline we were advised to plan on him being in a constant near vegetative state by age ten. Our “doctor” then went on to tell us (indirectly) how he could possibly die in a home “accident” and how such an “accident” might actually be a relief to us both mentally and financially. He then went on to tell us that he would continue to see our son but his time really wouldn’t be wasted trying to prevent an inevitable outcome. We switched doctors.

Our son is now 12 and reading at grade level.
 
vz71 said:
If there are truly other factors involved in this transplant that disqualify it as an option, then this seems like a no-brainer option to me.

If the hospital disclosed these reasons, the publicity would go away.
If the hospital cannot, then the hospital can specify why they cannot and put the publicity onus back upon the mother. And the publicity again goes away.

This seems a lot like poor PR at best.
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The hospital has stated that they cannot comment further because of confidentiality.
 
There are criteria for transplant recipients…I do not qualify for a liver transplant…I once contracted Hep C…it has been in remission now for 10 years…I went on aggressive therapy of pegalated Interferon and Riboviran for a year…Hep C negative now…but I do not qualify for a transplant as I have other health issues as well…these other issues bar me from liver transplant should I ever need one…there are not enough donors to supply the demand for transplants…so those who would receive the most benefit are usually chosen over those of us that are potential complications should the transplant be rejected.
 
Originally Posted by CDB1718
I don’t know where to start! I guess with saying that I would like to see some statistics to support the assertion that most children with a learning disability have epilepsy.
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I guess she means this.
LemonAndLime said:
Exactly my point.

Also, it is a fact that people with learning difficulties are more unhealthy than the rest of the population. Most have epilepsy. Most suffer from obesity, and have a difficult medication regime.

en.wikipedia.org/wiki/Developmental_disability#Physical_health_issues

The person quoted a while ago who said it was a myth that people with learning disabilities have the same health as the rest of the population was talking a load of trash.
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There is one **HUGE GLARING PROBLEM **with this claim, only 1% of children have some form of epilepsy - from the most “mild” no need for treatment to the more debilitating types.

[childrenshospital.org/az/Site842/ma(name removed by moderator)ageS842P0.html](http://www.childrenshospital.org/az/Site842/ma(name removed by moderator)ageS842P0.html)
About 1 percent of children in the United States develop some type of epilepsy. Children are affected more frequently than adults.
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While the percentage of children with learning disabilities is 5% to 10% (remember not all children with epilepsy have learning disabilities)
In 1987, the Interagency Committee on Learning Disabilities concluded that 5 percent to 10 percent is a reasonable estimate of the percentage of persons affected by learning disabilities.
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Read more on FamilyEducation: school.familyeducation.com/learning-disabilities/special-education/38567.html#ixzz1jwqzicMv
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SamH said:
I guess she means this.

There is one **HUGE GLARING PROBLEM **with this claim, only 1% of children have some form of epilepsy - from the most “mild” no need for treatment to the more debilitating types.

[childrenshospital.org/az/Site842/ma(name removed by moderator)ageS842P0.html](http://www.childrenshospital.org/az/Site842/ma(name removed by moderator)ageS842P0.html)

While the percentage of children with learning disabilities is 5% to 10% (remember not all children with epilepsy have learning disabilities)
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One HUGE GLARING PROBLEM with your statistics is that you are talking about the % of people with learning difficulties and the % of people with epilepsy. If you’re that good at research, whats the statistic of people with learning difficulties who have epilepsy as well? That’s whats under discussion here. Not seperate statistics of how many have epilspy and how many have LD, but how many have both. :rolleyes:
 
LemonAndLime said:
The hospital has stated that they cannot comment further because of confidentiality.
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Likely true, but the hospital needs to be able to say that they cannot comment further as the mother does not wish the information revealed.

Then the publicity will go away.
 
LemonAndLime said:
One HUGE GLARING PROBLEM with your statistics is that you are talking about the % of people with learning difficulties and the % of people with epilepsy. If you’re that good at research, whats the statistic of people with learning difficulties who have epilepsy as well? That’s whats under discussion here. Not seperate statistics of how many have epilspy and how many have LD, but how many have both. :rolleyes:
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Because you made the claim, the burden is on you to back it up.

It’s irrelevant to the topic, so I suggest the claim be withdrawn instead of further time devoted to it.

The sad experiences of those in this thread with the same hospital makes me happy for Amelia and sad that every child hasn’t had tens of thousands rallying around them for support like she has. A few internet skeptics calling for her records so they can judge her worthiness in their own estimation is overshadowed by the outpouring of support, which is the real story here.

That wave is hopefully going to change the medical culture so children like SamH’s and 90Domer’s don’t have to experience this again.
 
LemonAndLime said:
One HUGE GLARING PROBLEM with your statistics is that you are talking about the % of people with learning difficulties and the % of people with epilepsy. If you’re that good at research, whats the statistic of people with learning difficulties who have epilepsy as well? That’s whats under discussion here. Not seperate statistics of how many have epilspy and how many have LD, but how many have both. :rolleyes:
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This is anecdotal, of course, but my wife is an RN who arranges and directs medical care for developmentally disabled people. A lot of them have epilepsy, and part of her function is to instruct caretakers on how to deal with seizures. She monitors their anti-seizure meds and arranges physician care, shifts in meds, and so on. She gets calls, including in the middle of the night about people having seizures. I don’t have the statistics on how many LD people have epilepsy, but it would take a lot to convince me that it’s uncommon.
 
CDB1718 said:
None of this has anything to do with the facts reported by the mother in Amelia’s case.
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True. There is, however, a lot of speculation going on to invent excuses for the provider. Why doesn’t the hospital simply say “It’s contraindicated medically, having nothing to do with the child’s mental capacity. We could disclose the underlying information for that diagnostic conclusion, but we do not have permission to do so. Upon receiving permission, we will.”

But they’re not saying that. They’re dancing around it, but aren’t saying it.
 
Ridgerunner said:
True. There is, however, a lot of speculation going on to invent excuses for the provider. Why doesn’t the hospital simply say “It’s contraindicated medically, having nothing to do with the child’s mental capacity. We could disclose the underlying information for that diagnostic conclusion, but we do not have permission to do so. Upon receiving permission, we will.”

But they’re not saying that. They’re dancing around it, but aren’t saying it.
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I agree that would be a good solution, but I am not sure that they can even go that far legally. They may have to stop at “It’s contraindicated medically.” I am not even sure they are allowed to say that a specific procedure was considered and decided against.

Even while I was undergoing testing to donate a kidney for my sister, the hospital never gave me any medical information about her and they never gave her any information on me. We had to play telephone tag.

They could make a general statement that mental limitations are not alone a reason to reject a transplant, but since the public guidelines omit that reason it would only confirm what is already public information.
 
My last post was not worded well:o. I am pretty sure the hospital cannot say that a specific procedure was considered and rejected.
 
LemonAndLime said:
One HUGE GLARING PROBLEM with your statistics is that you are talking about the % of people with learning difficulties and the % of people with epilepsy. If you’re that good at research, whats the statistic of people with learning difficulties who have epilepsy as well? That’s whats under discussion here. Not seperate statistics of how many have epilspy and how many have LD, but how many have both. :rolleyes:
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I am pretty good at math. If only 1% of the population has epilepsy then in no way can they be 5% to 10% of the population with learning disablities. :rolleyes:

I’ll make it simple, if 1 person in a 100 has epilepsy there’s no way that they can also be 5 to 10 people in 100 with learning disabilities. Math doesn’t work that way.
 
Trader said:
My last post was not worded well:o. I am pretty sure the hospital cannot say that a specific procedure was considered and rejected.
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They can’t. In fact, they aren’t suppose to even admit that someone is a patient. I once called a doctor’s office to find out the time my Mom’s appointment. Until they looked up that she had signed a form allowing me information, they wouldn’t even give me the time.

The hospital’s hands are tied here. They can’t confirm or deny anything. The mother of the little girl can say anything and the hospital can’t correct her.
 
maryjk said:
The hospital’s hands are tied here. They can’t confirm or deny anything. The mother of the little girl can say anything and the hospital can’t correct her.
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I wouldn’t say their hands are completely tied.
They can reveal that they cannot provide further details, and specify what would be necessary for the details to be revealed.

But you are right, at this point it is a one sided story.

Whenever I find a story of actions as heinous as these, I tend to hold reservation until I know more details. Perhaps there is still an optimist in me that doesn’t believe people are really that bad and would like more evidence to convince me that they are cut from the same cloth as George Tiller.
 
vz71 said:
I wouldn’t say their hands are completely tied.
They can reveal that they cannot provide further details, and specify what would be necessary for the details to be revealed.

But you are right, at this point it is a one sided story.

Whenever I find a story of actions as heinous as these, I tend to hold reservation until I know more details. Perhaps there is still an optimist in me that doesn’t believe people are really that bad and would like more evidence to convince me that they are cut from the same cloth as George Tiller.
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According to the statement made by the hospital
We’re listening.
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We hear your concerns and take seriously your posts, emails and phone calls.
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While we remain unable to comment on individual CHOP patients or cases due to laws that protect patient privacy, we wish to state again that we do not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and mental disabilities.
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Please know that you have been heard and that your feedback is appreciated.
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The Children’s Hospital of Philadelphia
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They can’t comment on individual patients due to laws that protect privacy.

What more can they say?
 
“While we remain unable to comment on individual CHOP patients or cases due to laws that protect patient privacy, we wish to state again that **we do not disqualify potential transplant candidates on the basis of intellectual abilities./**B] We have transplanted many children with a wide range of disabilities, including physical and mental disabilities.”

That pretty much does it for me. If the Amelia’s parents had really been told the opposite, we would already have heard that the decision to deny the transplant had been reversed. The hospital still could not have made that announcement, but the mother could. If the mother was wrong all along, she would be morally obligated to say something since her first statement caused such serious damage to the reputation of the hospital.
 
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