baby takenoff life support, against parents wishes
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Posted 6/30/17 , edited 7/1/17
http://www.msn.com/en-us/news/world/against-his-parents%e2%80%99-wishes-this-terminally-ill-infant-will-be-allowed-to-die/ar-BBDsI95?ocid=HPCDHP
absolutely disgusting, they wouldn't even let them try to go to America for a expriemental drug that had a chance of helping, even if very small
NOR would they let the parents take the baby home to die at fucking home, this makes me mad, to me this is overreach of authority
there is no reason that the babycouldnt just at the very least die at home where it had never even been
edit: fixed mistake
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Posted 6/30/17 , edited 7/1/17
It's a very difficult situation for all involved. It certainly isn't something that should be simplified to a basic knee-jerk response...
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Posted 6/30/17 , edited 7/1/17
I agreed. Even with the slightest bit of hope, it should have been explored. I wonder if they plan to use the child's organs is the reason they refuse to allow his parents to take him home?
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Posted 6/30/17 , edited 7/1/17
As is typical with the Washington post the article is sensationalised click bait without any background. They clearly just sourced the article from internet posts and did no original content reporting (actually sent a reporter on their payroll to build context). Also there was no effort made to look up British law and provide context. This story is sad as posted but without proper context or anything remotely resembling actually factual reporting I have to take it with a grain of salt. This just looks like sensationalist click bait to me and as such I am ashamed I clicked on it and let them get paid.
runec 
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redokami wrote:

http://www.msn.com/en-us/news/world/against-his-parents%e2%80%99-wishes-this-terminally-ill-infant-will-be-allowed-to-die/ar-BBDsI95?ocid=HPCDHP
absolutely disgusting, they wouldn't even let them try to go to America for a expriemental drug that had a chance of helping, even if very small
NOR would they let the parents take the baby home to die at fucking home, this makes me mad, to me this is overreach of authority
there is no reason that the babycouldnt just at the very least die at home where it had never even been
edit: fixed mistake


I sincerely doubt the child would survive a trip to the US. This article is clickbaiting without getting into the real details.

The disease that the child has means, quite literally, that his body cannot produce energy to operate his muscles. He cannot move, he can't see, he can't hear, he can't breath, he is completely a prisoner in his own mind and even that would be deteriorating as this effects brain tissue as well. He can, however, still feel pain and suffer. It is completely fatal. There is no treatment for it. The experimental drug in question would not help him. It would, at best, prolong his suffering for a little while. It would not save his life nor would it improve his quality of life.

This is a genetic disease. So he will never recover from it.

As for not letting him go home, the reasons for that are likely because he would not even survive leaving the hospital and/or they're worried the parents will try to put him on a plane to the US and he will die horribly in transit. But its hard to say because with cases like this doctor/patient confidentiality prevents the hospital from defending itself regardless of what accusations the patient hurls at them.

All and all, its tragic, but nothing can be done to save this child and anything that is done would only briefly extend his suffering.



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Posted 6/30/17 , edited 7/1/17

runec wrote:


redokami wrote:

http://www.msn.com/en-us/news/world/against-his-parents%e2%80%99-wishes-this-terminally-ill-infant-will-be-allowed-to-die/ar-BBDsI95?ocid=HPCDHP
absolutely disgusting, they wouldn't even let them try to go to America for a expriemental drug that had a chance of helping, even if very small
NOR would they let the parents take the baby home to die at fucking home, this makes me mad, to me this is overreach of authority
there is no reason that the babycouldnt just at the very least die at home where it had never even been
edit: fixed mistake


I sincerely doubt the child would survive a trip to the US. This article is clickbaiting without getting into the real details.

The disease that the child has means, quite literally, that his body cannot produce energy to operate his muscles. He cannot move, he can't see, he can't hear, he can't breath, he is completely a prisoner in his own mind and even that would be deteriorating as this effects brain tissue as well. He can, however, still feel pain and suffer. It is completely fatal. There is no treatment for it. The experimental drug in question would not help him. It would, at best, prolong his suffering for a little while. It would not save his life nor would it improve his quality of life.

This is a genetic disease. So he will never recover from it.

As for not letting him go home, the reasons for that are likely because he would not even survive leaving the hospital and/or they're worried the parents will try to put him on a plane to the US and he will die horribly in transit. But its hard to say because with cases like this doctor/patient confidentiality prevents the hospital from defending itself regardless of what accusations the patient hurls at them.

All and all, its tragic, but nothing can be done to save this child and anything that is done would only briefly extend his suffering.





Omg we actually agree on something for once. This article like everything from MSN who just reposted a Washington post article is just click bait. Then again as an independent I know practically everything from MSN and the Washington post is unsubstantiated click bait. I feel stupid for clicking on the link and letting these hacks get paid for the visit lmao.
runec 
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Posted 6/30/17 , edited 7/1/17

bernardwheelerjr wrote:
I feel stupid for clicking on the link and letting these hacks get paid for the visit lmao.


The eternal struggle between wanting to read it so you can rant about it but also not wanting to reward the writer with a click. I know it well.
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Posted 6/30/17 , edited 7/1/17
That's terrible.
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Posted 6/30/17 , edited 7/1/17
runec 
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Posted 7/1/17 , edited 7/1/17


Good find. Also, yes, the court goes into the problem:


At one stage, Great Ormond Street Hospital got as far as deciding to apply for ethical permission to attempt nucleoside therapy here - a treatment that has never been used on patients with this form of MDDS - but, by the time that decision had been made, Charlie's condition had greatly worsened and the view of all here was that his epileptic encephalopathy was such that his brain damage was severe and irreversible that treatment was potentially painful but incapable of achieving anything positive for him.


So they actually were going to attempt the experimental therapy, even though it had never been tested on this condition specifically, but he was simply too far gone.

And the opinion of the US doctor conducting the experiemental treatment stateside:


"Seeing the documents this morning has been very helpful. I can understand the opinions that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely."



The US doctor also confirmed during this telephone conversation that he had never treated with nucleoside therapy anyone who had encephalopathy. Therefore, he was unable to indicate from any scientific basis whether a patient with encephalopathy would respond positively.



No one in the world has ever treated this form of MDDS with nucleoside therapy, although patients with a different strain, TK2, have received nucleoside therapy with some recorded benefit. In mouse models, the benefit to TK2 patients was put at about 4% of life expectancy. There is no evidence that nucleoside therapy can cross the blood/brain barrier which it must do to treat RRM2B, although the US doctor expressed the hope that it might cross that barrier.

There is unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage.


So no scientific basis for it actually helping him and even if it did, the best outcome would be 4% of life expectancy. So even it was a treatment for his condition he would get a couple of years and in those years he would be living off of machines suffering with brain damage.

I agree with the judge here. I feel for the parents but that just is not in the child's best interest to suffer for a couple more years hooked up to machines with no hope of life or even an improvement in the quality of life.


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