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Old 29-06-2017, 11:06 PM #1
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Default Charlie guard must die

http://www.bbc.co.uk/news/uk-england-40423371

Does anyone know anything about the treatment his parents are fighting for him to get to try to save his life?

With only 16 people in the world with the illness how can the judge be so certain the treatment cannnot save him

There has been a long pattern in our nhs in recent times of supporting the right to die

But what of the right to live? After all isnt that what the NHS is for?

These poor parents have raised £1.3 million which more than pays for charlies treatment if he were allowed to go to the USA to try this revolutionary treatment

IF in years to come the treatment is shown to work on other babies, then this judge imo is guilty of manslaughter
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Old 29-06-2017, 11:56 PM #2
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As far as I understand it, the treatment can only halt the illness, it can't reverse any damage already done. Basically he might have survived but it would have been with severe brain damage and potentially in pain. I've also read that the actual doctors running the treatment in the US had some reservations with his specific case and the ethics of going ahead with treatment.

Its a complicated area really. You're balancing the merits of "life at any cost" vs life with any sort of quality. In this case, I fully believe that his doctors have his best interests in mind when denying this treatment.
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Old 30-06-2017, 12:21 AM #3
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As far as I understand it, the treatment can only halt the illness, it can't reverse any damage already done. Basically he might have survived but it would have been with severe brain damage and potentially in pain. I've also read that the actual doctors running the treatment in the US had some reservations with his specific case and the ethics of going ahead with treatment.

Its a complicated area really. You're balancing the merits of "life at any cost" vs life with any sort of quality. In this case, I fully believe that his doctors have his best interests in mind when denying this treatment.
The american neurologist said the therapy, which would be tried for six months, would provide a "small chance" of a meaningful improvement in Charlie's brain function.
"[Charlie] may be able to interact. To smile. To look at objects," he said.
Sophia Roper, representing Charlie's parents, also told the court there was "no evidence that he is on a regular basis in pain".
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Old 30-06-2017, 12:46 AM #4
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Such a sad story.
I really feel for Charlie and his parents.
Sometimes, you have to love somebody enough to let them go.
They have done everything within their power to find a way to help their son, but if they are being told he has no quality of life and will be feeling pain then they need to be brave enough to let him go.
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Old 30-06-2017, 01:03 AM #5
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Such a sad story.
I really feel for Charlie and his parents.
Sometimes, you have to love somebody enough to let them go.
They have done everything within their power to find a way to help their son, but if they are being told he has no quality of life and will be feeling pain then they need to be brave enough to let him go.
what do you know about the treatment on offer in america
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Old 30-06-2017, 08:09 AM #6
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I posted this back in April which gives the American specialist opinion on treating Charlie.

We should keep in mind that America providing parents have money will do anything the parents would like to be done regardless of what is good for the child. In this case however, it sounds like this specialist is saying that Charlie's severe brain damage is irreversible at this stage of his illness.

I agree with Smudgie. If treatment is done at this stage on purely compassionate reasons (for the parents), taking Charlie's best interest out of their hands is tragic but probably necessary.
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Old 30-06-2017, 08:46 AM #7
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Such a sad story,hard to know what to say,I am sure if he was mine I would want to try anything to keep him,where there is life there is hope,but on the other hand I wouldn't want my little man to suffer.
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Old 30-06-2017, 08:59 AM #8
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This is desperately sad.
I really think the Parents wishes should have been the deciding factor here.

There was nothing to lose at all,likely nothing to gain either very sadly.
However they would have had the knowledge they had really tried anything and everything.

Awful decision this in my opinion.
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Old 30-06-2017, 09:13 AM #9
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This is desperately sad.
I really think the Parents wishes should have been the deciding factor here.

There was nothing to lose at all,likely nothing to gain either very sadly.
However they would have had the knowledge they had really tried anything and everything.

Awful decision this in my opinion.
Yes,I think that sums my feelings up nicely Joey
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Old 30-06-2017, 09:29 AM #10
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Yes,I think that sums my feelings up nicely Joey
For all their lives Kazanne,they will always be wondering 'what if'.

I think the added decision of not allowing them to take their child home to die is absolutely disgraceful too.

Heartbreaking story.
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Old 30-06-2017, 10:05 AM #11
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It's multiple Judges not a Judge, the case has been to the high court, supreme Court, the European court.

While I understand how desperate his parents must be, it has been said by experts that this baby is suffering and in pain. I don't think the needs of the parent should be considered over the suffering of the child and I think that is where each of the court decisions are coming from.

Great Ormand Street is a wonderful caring hospital who fight hard for the lives in their care. I don't think for one moment they would oppose the parents in court if they thought there was any hope or benefit to this child.

As to taking him home to die, again this is probably a decision with regard the welfare of this little boy and where it is better for him to be to have the least pain and suffering.

It's such a sad case but I don't believe the hospital is doing anything but putting his care first.
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Old 30-06-2017, 10:19 AM #12
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Originally Posted by jaxie View Post
It's multiple Judges not a Judge, the case has been to the high court, supreme Court, the European court.

While I understand how desperate his parents must be, it has been said by experts that this baby is suffering and in pain. I don't think the needs of the parent should be considered over the suffering of the child and I think that is where each of the court decisions are coming from.

Great Ormand Street is a wonderful caring hospital who fight hard for the lives in their care. I don't think for one moment they would oppose the parents in court if they thought there was any hope or benefit to this child.

As to taking him home to die, again this is probably a decision with regard the welfare of this little boy and where it is better for him to be to have the least pain and suffering.

It's such a sad case but I don't believe the hospital is doing anything but putting his care first.
I agree.If this lad is suffering needlessly then the experts should be listened to.The welfare of the kid should come before the wants of the parents as sad as it is.
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Old 30-06-2017, 10:40 AM #13
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This has been a heartbreaking story and one that will resonate with any parent. I wish the little lad peace from his suffering.
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Old 30-06-2017, 10:41 AM #14
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Quote:
Originally Posted by jaxie View Post
It's multiple Judges not a Judge, the case has been to the high court, supreme Court, the European court.

While I understand how desperate his parents must be, it has been said by experts that this baby is suffering and in pain. I don't think the needs of the parent should be considered over the suffering of the child and I think that is where each of the court decisions are coming from.

Great Ormand Street is a wonderful caring hospital who fight hard for the lives in their care. I don't think for one moment they would oppose the parents in court if they thought there was any hope or benefit to this child.

As to taking him home to die, again this is probably a decision with regard the welfare of this little boy and where it is better for him to be to have the least pain and suffering.

It's such a sad case but I don't believe the hospital is doing anything but putting his care first.
I sadly agree in cases like these Jaxie; it's important that people can step in to stop a child from suffering needlessly. In life in general I 100% believe that parent's wishes for their children should take priority but when it comes to things like this... it's an impossible decision for a parent to make.

Allowing a procedure to take place when it has very little likelihood of succeeding at all, and even if it did succeed, a likelihood of prolonging or potentially even increasing suffering, is not always the right thing to do and frankly the parents are likely to be holding into an infinitesimal hope that the medical professionals, from an objective stance, can see is not realistic.
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Old 30-06-2017, 11:40 AM #15
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For all their lives Kazanne,they will always be wondering 'what if'.

I think the added decision of not allowing them to take their child home to die is absolutely disgraceful too.

Heartbreaking story.
Yes,I think that is the least I would want,to have him home and privacy.So sad
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Old 30-06-2017, 11:50 AM #16
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Originally Posted by jaxie View Post
It's multiple Judges not a Judge, the case has been to the high court, supreme Court, the European court.

While I understand how desperate his parents must be, it has been said by experts that this baby is suffering and in pain. I don't think the needs of the parent should be considered over the suffering of the child and I think that is where each of the court decisions are coming from.

Great Ormand Street is a wonderful caring hospital who fight hard for the lives in their care. I don't think for one moment they would oppose the parents in court if they thought there was any hope or benefit to this child.

As to taking him home to die, again this is probably a decision with regard the welfare of this little boy and where it is better for him to be to have the least pain and suffering.

It's such a sad case but I don't believe the hospital is doing anything but putting his care first.
Yes I would agree with this

Obviously the parents will find it hard to let go, anyone would. But it really does sound like its best for the child. The people who have had input into this are highly qualified...and it does sound like it is the best thing for the baby.

I can't imagine ever having to make such a choice though.
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Old 30-06-2017, 12:15 PM #17
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I just can't see the issue.. If the funding is secured why can this not be an option?

There is no logic behind it other than 'it hasn't been done' 'it may not work'
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Old 30-06-2017, 12:20 PM #18
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I just can't see the issue.. If the funding is secured why can this not be an option?

There is no logic behind it other than 'it hasn't been done' 'it may not work'
And the child suffering in the meantime of course. Along with even if the treatment does work, the child will likely be severely brain damaged which (in most cases) isn't really a decent quality of life anyway.

Many highly qualified professionals have had an opinion on this and they near all say the same thing. This can't really just be ignored.

I feel so bad for the parents. I really do. But it has to be whats best for the actual child, not whats best for them :S
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Old 30-06-2017, 12:23 PM #19
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Great Ormond street is the best children's hospital in the world with doctors coming from all over the world to train there.

My daughter attended there for eighteen years.
No parent wants to lose their child, but to me its clear the doctors faught to do the right thing by the child.
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Old 30-06-2017, 01:06 PM #20
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Originally Posted by jaxie View Post
It's multiple Judges not a Judge, the case has been to the high court, supreme Court, the European court.

While I understand how desperate his parents must be, it has been said by experts that this baby is suffering and in pain. I don't think the needs of the parent should be considered over the suffering of the child and I think that is where each of the court decisions are coming from.

Great Ormand Street is a wonderful caring hospital who fight hard for the lives in their care. I don't think for one moment they would oppose the parents in court if they thought there was any hope or benefit to this child.

As to taking him home to die, again this is probably a decision with regard the welfare of this little boy and where it is better for him to be to have the least pain and suffering.

It's such a sad case but I don't believe the hospital is doing anything but putting his care first.
His parents have tried everything in their power to try and help Charlie, understandably so.
It is sad, but the doctors have to put his welfare first.
I can understand the parents anguish, nobody would find it easy to let their child go.
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Old 30-06-2017, 01:17 PM #21
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I just can't see the issue.. If the funding is secured why can this not be an option?

There is no logic behind it other than 'it hasn't been done' 'it may not work'
To be brutally frank; it's because it might "save his life" but will leave him severely brain-damaged and potentially in constant pain for several years. The brain-damage isn't a "maybe" - it is already present and cannot be reversed - the treatment would only have halted it where it was. He isn't just disabled, it would be a case of unresponsive wakefulness and the chances of any improvement there are absolutely miniscule. Even if response was gained it wouldn't be at the level of meaningful interaction.

Essentially... 99.9% chance that it would simply be keeping him alive and suffering for the benefit of others. I can empathise with how painful the alternative is for a parent, but it's still not an ethical thing to do, and that's why even the doctors who offer the treatment had reservations in this case (though they would likely still have done it for the cold hard $$$).

Of course, no parent can be expected to make this sort of decision if they're being told there's even a 0.0001% chance, and that's why I think it was in this case right for his doctors to step in. They obviously don't "want" him to die, this isn't a case of saving them money or anything as the funds had been raised, literally the only reason they would have blocked it is on ethical grounds.

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Old 30-06-2017, 02:06 PM #22
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Practical Ethics paper about Charlie Guard.
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Old 30-06-2017, 02:06 PM #23
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It's a tragic case, but it is time to let him go, I think the parents aren't thinking straight at this point, brain damage is irreversible, the treatment is experimental, I understand they would like him to die at home, but it seems this would cause him a lot of needless distress, it Seems to me the doctors are doing everything they can to minimise his pain, it must be difficult in the face of the distraught parents, its to their credit the doctors are standing firm
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Old 30-06-2017, 07:23 PM #24
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For all their lives Kazanne,they will always be wondering 'what if'.

I think the added decision of not allowing them to take their child home to die is absolutely disgraceful too.

Heartbreaking story.
Ahh I didn't know this part. I do find that part really cruel. I am sure there is a reason behind it, but it just seems awful

https://www.change.org/p/great-ormon...rm=autopublish

Just seen this on facebook which brought me back to this thread then I saw it had already been mentioned by you which I must have skimmed over
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Old 30-06-2017, 07:57 PM #25
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Thanks, I signed the petition. Its time for Charlie to go home.
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