Hospital denies life saving transplant to child because of special needs

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CDB1718 said:
Message from Archbishop Chaput: Amelia Rivera, the disabled and the sanctity of life
catholicphilly.com/2012/01/news/amelia-rivera-the-disabled-and-the-sanctity-of-life/
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Here’s a quote from the Archbishop:

It’s unwise to assume that news media get all the details of a story like this right, or that the motives of an entire hospital’s leadership and staff are as unfeeling as an individual doctor might seem. Nonetheless, a couple of things are worth noting. First, Amelia’s parents are persons who love their daughter zealously for who she is, and who know the beauty and dignity of her life despite her disability. Second, the habit of treating genetically disabled children as somehow less worthy of life is growing across the country.

I cannot get over the doctor’s comment that “we have been warned that you are very involved with your daughter’s care” - as if that was a bad thing. The doctor should have been happy that the child’s parents are very involved, because that means medically a better compliance, and an increased chance of success. However, the doctor apparently regarded that as a negative, and that really gives away his bad intentions.

I think the hospital is still in damage control mode and they haven’t come clean about their doctor’s attitude and statements regarding Amelia.
 
SamH said:
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.
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That’s not how statistics works dear :rotfl:. The 1 to 100 figure applies to the general population, not people with learning difficulties. If you had a population purely of people with LD the rate of epilepsy is higher. Thats a statistic and unless you provide evidence other than bad mathmatical reseaoning then I will cease discussion with you on this topic.

But just to make sure you understand, here’s another source for you just to prove my point -

From the Epilepsy Society -
Epilepsy is more common in people with a learning disability than in the general population. About 30% of people (nearly 1 in 3) who have a mild to moderate learning disability also have epilepsy. The more severe the learning disability, the more likely it is that a person will also have epilepsy. Around 20% of people (1 in 5) with epilepsy also have a learning disability.
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epilepsysociety.org.uk/AboutEpilepsy/Epilepsyandyou/Epilepsyandlearningdisability-1
 
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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They’re highly unlikely though to say “We can’t give anymore information because the relatives have refused to give permission.” That could be seen to be inflammatory.

As another poster has said, the LD the child has is particulartly vulnerable to surgery.
 
LemonAndLime said:
That’s not how statistics works dear :rotfl:. The 1 to 100 figure applies to the general population, not people with learning difficulties. If you had a population purely of people with LD the rate of epilepsy is higher. Thats a statistic and unless you provide evidence other than bad mathmatical reseaoning then I will cease discussion with you on this topic.

But just to make sure you understand, here’s another source for you just to prove my point -

From the Epilepsy Society -

epilepsysociety.org.uk/AboutEpilepsy/Epilepsyandyou/Epilepsyandlearningdisability-1
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I guess when you’ve lost the arguement you should change the arguement to something you think you can win.
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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SamH said:
I guess when you’ve lost the arguement you should change the arguement to something you think you can win.
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I haven’t changed any argument. I have just proven I am correct - the incidence of epilepsy is higher in people with LD.
 
LemonAndLime said:
I haven’t changed any argument. I have just proven I am correct - the incidence of epilepsy is higher in people with LD.
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You said all people with a learning disability have health problems. And you said that most people with a learning disability have epilepsy.

If the doctors were concerned about Amelia’s ability to survive the surgery and if the mom was just mad because her daughter was denied, no matter how valid the reason, then the conversation would have focused on how sickly the doctor thinks she is and how healthy the mom thinks she is. That didn’t come up. Your anecdotal experiences are not relevant to this situation.

The people who’ve posted on this very thread, on Facebook, on Amelia’s petition, who say that they experienced the same kind of bias against their children with intellectual disabilities, even at the same hospital, have a much more convincing and on-topic personal story to tell about how pervasive this culture is.
 
CDB1718 said:
You said all people with a learning disability have health problems. And you said that most people with a learning disability have epilepsy.

If the doctors were concerned about Amelia’s ability to survive the surgery and if the mom was just mad because her daughter was denied, no matter how valid the reason, then the conversation would have focused on how sickly the doctor thinks she is and how healthy the mom thinks she is. That didn’t come up. Your anecdotal experiences are not relevant to this situation.
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Read the thread. Someone said that people with LD are just as healthy as the normal population (and the mother said this too). However, if epilepsy is higher rate (as well as obesity) then that assertion is false.
The people who’ve posted on this very thread, on Facebook, on Amelia’s petition, who say that they experienced the same kind of bias against their children with intellectual disabilities, even at the same hospital, have a much more convincing and on-topic personal story to tell about how pervasive this culture is.
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Another poster has also said that the type of LD the child has puts her at particular risk of surgery and also renal impariement. Obviously the child isn’t a healthy one as she needs this transplant so I think “just because she has LD” is obviously erroneous. People without LD get rejected for transplants too.
 
LemonAndLime said:
They’re highly unlikely though to say “We can’t give anymore information because the relatives have refused to give permission.” That could be seen to be inflammatory.
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From a PR standpoint, it can’t get worse.
Flame on, there is nothing to lose.
 
vz71 said:
They could specify the conditions necessary to allow them to reveal more information.
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And put pressure on the mother and provoke an angry response from her? I don’t see that happening. It’s also unnessary for them to say that.
 
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