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BS: The Very Sad Case Of Charlie Gard

Senoufou 14 Jul 17 - 09:05 AM
Stu 14 Jul 17 - 10:16 AM
Senoufou 14 Jul 17 - 12:48 PM
Jack Campin 14 Jul 17 - 01:51 PM
Donuel 14 Jul 17 - 02:04 PM
Senoufou 14 Jul 17 - 02:17 PM
akenaton 14 Jul 17 - 04:19 PM
Mrrzy 14 Jul 17 - 11:16 PM
Senoufou 15 Jul 17 - 03:15 AM
Jack Campin 15 Jul 17 - 05:56 AM
Backwoodsman 15 Jul 17 - 06:35 AM
Jack Campin 15 Jul 17 - 06:54 AM
Senoufou 15 Jul 17 - 09:38 AM
Greg F. 15 Jul 17 - 10:04 AM
Senoufou 15 Jul 17 - 10:24 AM
Backwoodsman 15 Jul 17 - 11:04 AM
Jack Campin 15 Jul 17 - 11:09 AM
Jeri 15 Jul 17 - 11:20 AM
Senoufou 15 Jul 17 - 12:38 PM
Backwoodsman 15 Jul 17 - 01:04 PM
JennyO 15 Jul 17 - 03:10 PM
Pete from seven stars link 15 Jul 17 - 03:15 PM
Senoufou 15 Jul 17 - 03:41 PM
Steve Shaw 15 Jul 17 - 06:43 PM
JennyO 15 Jul 17 - 10:09 PM
DMcG 16 Jul 17 - 03:38 AM
Big Al Whittle 16 Jul 17 - 10:29 AM
olddude 16 Jul 17 - 11:37 AM
Andrez 16 Jul 17 - 11:12 PM
Richard Bridge 17 Jul 17 - 05:12 AM
Donuel 17 Jul 17 - 05:09 PM
Tattie Bogle 17 Jul 17 - 08:32 PM
Senoufou 18 Jul 17 - 07:24 AM
Pete from seven stars link 18 Jul 17 - 11:17 AM
Senoufou 18 Jul 17 - 11:38 AM
Mrrzy 18 Jul 17 - 10:08 PM
Senoufou 19 Jul 17 - 03:21 AM
Mrrzy 19 Jul 17 - 11:26 AM
Jack Campin 19 Jul 17 - 02:06 PM
Mrrzy 19 Jul 17 - 02:16 PM
Pete from seven stars link 19 Jul 17 - 04:31 PM
Howard Jones 20 Jul 17 - 08:10 AM
Nigel Parsons 20 Jul 17 - 09:16 AM
Senoufou 20 Jul 17 - 09:36 AM
punkfolkrocker 20 Jul 17 - 09:57 AM
Donuel 20 Jul 17 - 10:35 AM
Mrrzy 20 Jul 17 - 10:20 PM
Senoufou 21 Jul 17 - 02:47 AM
Iains 21 Jul 17 - 07:11 AM
Senoufou 21 Jul 17 - 07:22 AM
Iains 21 Jul 17 - 08:05 AM
Senoufou 21 Jul 17 - 09:03 AM
Mrrzy 21 Jul 17 - 09:15 AM
Iains 21 Jul 17 - 02:24 PM
punkfolkrocker 21 Jul 17 - 02:54 PM
Backwoodsman 24 Jul 17 - 01:45 AM
Senoufou 24 Jul 17 - 03:38 AM
Iains 24 Jul 17 - 04:00 AM
Senoufou 24 Jul 17 - 04:58 AM
Iains 24 Jul 17 - 06:45 AM
Senoufou 24 Jul 17 - 06:57 AM
Iains 24 Jul 17 - 08:04 AM
Mrrzy 24 Jul 17 - 09:46 AM
Senoufou 24 Jul 17 - 01:23 PM
Tattie Bogle 24 Jul 17 - 01:49 PM
Andrez 24 Jul 17 - 06:01 PM
Senoufou 28 Jul 17 - 01:35 PM
punkfolkrocker 28 Jul 17 - 02:05 PM
Senoufou 28 Jul 17 - 02:39 PM
Mrrzy 28 Jul 17 - 03:51 PM
Tattie Bogle 28 Jul 17 - 06:05 PM
MikeL2 29 Jul 17 - 10:37 AM
akenaton 29 Jul 17 - 11:27 AM
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Subject: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 14 Jul 17 - 09:05 AM

I expect people have been following this case now for several weeks. It concerns a young baby born with an extremely rare genetic condition called mitochondrial disease, which has caused untold damage to his brain. He is now on a ventilator, is blind, deaf, cannot move and (say the Great Ormond Street Hospital consultants) possibly suffering pain.
His poor parents are at their wits' end after a Court ruling that agreed the life-support should be switched off and his care changed to 'palliative only'.

Justice Nicholas Francis had the unenviable task yesterday of hearing an Appeal, which considered the claims of a USA doctor who thinks he may be able to improve the child's condition.

I can't comment on the case one way or another, not being a Consultant Paediatrician, but what I do feel is absolute disgust at the dreadful media circus which has sprung up both online and outside the hospital itself.
People are baying and waving placards, accusing the staff of being 'murderers', calling themselves 'Charlie's Army' and posting unspeakable threats and vituperative spite on various social media sites.
I can't imagine how the parents are coping with this dire situation.
Anyone any thoughts about it?


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Stu
Date: 14 Jul 17 - 10:16 AM

Tragic case. I don't think anyone's wrong in a way, the parents trying to do what's best for their child as they see it, the doctors doing the same.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 14 Jul 17 - 12:48 PM

That's true Stu. I feel the Police should take steps to remove the demonstrators from outside GOSH. There are very poorly children inside and the whole thing is a serious disruption. What's more, the staff are being threatened and intimidated, and are only doing their jobs as best they can.
Fortunately, the Court is adhering to its remit, which is to act solely in the best interests of the child. But I don't envy one bit the Judge. He's more or less weighing up the precarious 'existence' of this very ill baby against letting him slip away humanely.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Jack Campin
Date: 14 Jul 17 - 01:51 PM

There have been a few similar cases lately where some ruthless American medic has promised miracles for a child dying of some utterly hopeless illness, if only the parents can crowdfund a million. Unscrupulous scum.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Donuel
Date: 14 Jul 17 - 02:04 PM

I even had the mitochondrial tests done on my son which is a sad case of its own. Hope makes us try hopeful things.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 14 Jul 17 - 02:17 PM

I'm sorry about your son Donuel. You're right I'm sure - one must clutch at any kind of hope for one's child.

I feel the fact that this poor baby can't even breathe unaided, and would expire immediately if the ventilator were to be switched off, is an important factor. The so-called 'palliative care' would presumably last just a few minutes.

I just wish the Mob would consider the effect of their appalling behaviour towards staff at the hospital. Nurses, doctors and technicians have been doing their best and are on the receiving end of abuse through no fault of their own. Their stress must be unbearable.

And Trump and the Pope sticking their noses in is simply the outside of enough in my view.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: akenaton
Date: 14 Jul 17 - 04:19 PM

Like Sen Don, I am very sorry to hear of your son's ill health.

Things like that make all our arguments seem superfluous.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Mrrzy
Date: 14 Jul 17 - 11:16 PM

Bon courage, Donuel.

Would it further the knowledge of the disease were the child to get the experimental treatment? Does anybody know what said treatment consists of?

I'm also unclear on the syndrome. I know what mitochondrial dna is, and what mitochondria do, so I'm assuming that without their dna, the mitochondria don't function, so power to the cell. Is that it?


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 15 Jul 17 - 03:15 AM

That's it I believe Mrrzy. The specialists say only 16 people throughout the world have been born with Mitochondrial DNA Depletion, and all died in early infancy.

The treatment is purportedly an oral administration of something which 'replaces the mitochondria' and 'improves somewhat' the condition. But the USA chap has never treated an infant who has deteriorated so much.
As there has been untold brain damage, the consultants at GOSH feel that any 'improvement' would be minimal or non-existent.

And to experiment on the child is unethical. If the procedure were to do some good, as there are only 16 known cases, it wouldn't be used very often.
The point which concerns me the most (and I admit I am absolutely ignorant) is the statement by the GOSH consultants that the baby could be in pain. Paralysed, blind, deaf and unable to breathe unaided, having many seizures every day, he could be suffering untold pain and it would be impossible to tell.

I'm hoping the three-ring circus of media attention, demonstrators, online bile and so on will die down. People get bored eventually and seek another 'sensation' to get heated about.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Jack Campin
Date: 15 Jul 17 - 05:56 AM

The case this reminded me of was in Scotland where a family was raising funds to send their kid to the US for an experimental treament for diffuse intrinsic pontine glioma (a kind of brain tumour with a 100% mortality within a year). The treatment they were trying to fund was very expensive and had never cured anyone. They were paying for their child to be used as a lab rat.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Backwoodsman
Date: 15 Jul 17 - 06:35 AM

It sounds to me as though they were very desperate people who were prepared to explore any avenue in an attempt to save a child they loved very dearly.

Unless you're in that position, it's impossible to know how you would be affected, or how you would deal with it, and who are we to criticise those people?

They were paying for their child to be given treatment in the hope that he or she could be cured, and in circumstances that the vast majority of us have never had to face. It's a disgusting insult to refer to the child as a 'lab-rat', you should be ashamed of yourself.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Jack Campin
Date: 15 Jul 17 - 06:54 AM

That WAS how the child was being abused. Taken far away from home to die in an alien environment after incomprehensible medical procedures with zero chance of recovery.

Doctors like that are the ones who should be ashamed of themselves. No morally different from hucksters selling laetrile. But it was a case of somebody with money making even more money, so I can see why you'd approve of it.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 15 Jul 17 - 09:38 AM

The paediatric staff and consultants at GSOH are some of the most knowledgeable and advanced in the world. They know what they're doing and their decisions aren't made lightly I'm sure. If they advise palliative care then I'd say it's the best thing for the poor child.

Since the Pope, Trump and this American doctor have emerged from the woodwork, the beleaguered parents are quite understandably clutching at the straws they offer. And while the controversy continues, this baby might be suffering pain.

It's so tragic. I feel sorry for all involved, and especially for Judge Nicholas Francis. He must feel like Solomon.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Greg F.
Date: 15 Jul 17 - 10:04 AM

Since the Pope, Trump and this American doctor well, that's three of the Four Horsemen. The last thing they care about is the welfare of the baby and whether he's suffering or not.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 15 Jul 17 - 10:24 AM

The Pope has offered a place for Charlie in the special Vatican City hospital. But what could they do there for him that isn't already being done in London? And the journey apparently would probably prove fatal.

By getting involved, he's implying that the GOSH specialists are pushing for euthanasia (which isn't the same as 'palliative care') and making himself out to be valuing the life of a baby more than they do.

Trump also is trying to insinuate that America knows more than the UK about this condition and this child, which is palpably untrue.

The American doctor hasn't even examined the boy. He's coming here next week to see if he thinks he can do anything. The parents have raised over £1m by one of these online charities. They're having to pay for his visit (and he may require a lot more funds for the consultation)

Meanwhile, 'Charlie's Army' continue to rant and rave, accusing GSOH of being monsters, child-killers and murderers.

The whole fiasco is simply appalling.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Backwoodsman
Date: 15 Jul 17 - 11:04 AM

Campin, I expressed neither approval nor disapproval, I merely expressed my belief that nobody should judge others who are in the parents' position, it's a very personal issue and the parents must do what they feel is best.

However, I do very strongly disapprove of anyone who calls a desperately, perhaps terminally, sick child a 'lab-rat'.

Twat.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Jack Campin
Date: 15 Jul 17 - 11:09 AM

I was saying that "lab rat" was how the AMERICAN DOCTOR sees the kid (as well as "money in the bank"). Of course it's disgusting. So is everything about private medicine.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Jeri
Date: 15 Jul 17 - 11:20 AM

Suffering...

It seems like the "other people" making the decision want to put the child out of THEIR misery. I have doubts about how much that baby feels or whether it's a problem for hi. Patients suffer while everybody and their second cousins debate about their fate. If you argue that the best thing for this child is a mercy killing, well, get out of the way. I say give this non-painful procedure a try.

Seriously, isn't this "death panel" thing what those opposed to Obamacare were worried about? Would you want somebody telling you you had no say in your loved one's treatment?


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 15 Jul 17 - 12:38 PM

I think another factor is that the brain damage cannot be reversed. So even if he survived, little Charlie would be blind, deaf and completely paralysed. And suffering seizures every day. One wonders what sort of 'life' that would be...

My poor sister, a doctor, had to make a terrible decision regarding her young husband of 36. She had two young babies when he collapsed from a massive brain aneurysm. He was kept alive on a ventilator, but was virtually brain-dead. She bravely agreed that the life-support should be switched off and as many organs as possible taken for transplants.
Her decision saved the life of many people, but it was a dreadful time for us all.
These situations are never easy and I pity Charlie's parents with all my heart.
I think perhaps the US doctor should be allowed to try, but then the Court should rule in favour of GOSH.
At least then the couple would feel they'd done all they could.
(Not that my feeble opinion carries any weight at all, and it would be arrogant to maintain otherwise)


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Backwoodsman
Date: 15 Jul 17 - 01:04 PM

Your exact words, Campin - "They were paying for their child to be used as a lab-rat."
Your words, your description of the child. Stop wriggling.
Disgusting.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: JennyO
Date: 15 Jul 17 - 03:10 PM

The way I read Jack Campin's post, I did not get the impression HE was thinking of the child as a lab rat. He was saying that was the motivation of the doctor in the US who wanted to give him the treatment.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Pete from seven stars link
Date: 15 Jul 17 - 03:15 PM

Same here . I think jack sometimes confrontational , but I took it as a swing at the US doctor , not the parents


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 15 Jul 17 - 03:41 PM

I too don't think Jack meant that he himself regards the child as a 'lab-rat', just that using this situation as an experimental opportunity is not dissimilar to using laboratory animals.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Steve Shaw
Date: 15 Jul 17 - 06:43 PM

I can't be the only person on the planet who thinks that I don't know enough of the intimate details of this case, nor can I even begin to feel what the parents feel, to come to any sort of judgement. This has become a horrid tabloid-fest and even the BBC is complicit. I have that much to say and no more.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: JennyO
Date: 15 Jul 17 - 10:09 PM

Absolutely agree with you, Steve Shaw. Trial by media has unfortunately become a common way of approaching anything that is newsworthy. It's a terrible situation for all concerned, and I wish them all luck in finding the least terrible solution.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: DMcG
Date: 16 Jul 17 - 03:38 AM

You are right, Steve. I would go further and say that, unless I were the judge, or part of the clinical team, etc etc, I have no right to make a judgement at all, even if I had all the information.

On the other hand, I do think it legitimate to question the role of the US doctor. At the very least, there is something highly distasteful about the attitude "I could help, but will only do so if you pay me far more than my costs". He has a right to make a living, naturally, but there comes a point where that elides into something much darker.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Big Al Whittle
Date: 16 Jul 17 - 10:29 AM

very sad. a bit weird really. these rich people like the pope and Trump could pay for the treatment, just like that without all this bother.

if it works - all to the good.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: olddude
Date: 16 Jul 17 - 11:37 AM

In my prayers don, I am so sorry to hear about your son.. Hang tough my brother


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Andrez
Date: 16 Jul 17 - 11:12 PM

Lets not lose sight of the fact that no part of this event is easy for anyone, least of all Charlie and his parents. One point to note though in response to Sen's observation above: I think another factor is that the brain damage cannot be reversed. So even if he survived, little Charlie would be blind, deaf and completely paralysed, and that is the fact of "neuroplasticity".

Assuming Charlie can survive the immediate issue it is not impossible that with the right treatment program his brain may wire, or rewire itself to provide some degree of improved sensory and physical functionality. I'm not suggesting a cure here but just that we can't know before hand how developmental change will progress any possibility of improved quality of life. Just a thought anyway.

Hugs and best wishes from the Antipodes to you and your family Charlie!

Cheers,

Andrez


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Richard Bridge
Date: 17 Jul 17 - 05:12 AM

I am fairly sure that even the offerors of this wholly untested medical procedure do not hold out ANY hope of improvement, merely a possible arrest in decline. I remain of the view that this treatment would at best result in extending the suffering of a biomass that cannot by ay remote stretch of the imagination be thought of as truly human.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Donuel
Date: 17 Jul 17 - 05:09 PM

Tabloids* are not physicians

One treatment for low mitochondrial function is Taking ADP which is food for cells. Simple. My sister survived on ADP alone for 2 1/2 years after having all her digestive organs removed as a result of US military radioactive iodine experiments.

Is this how Murdoch* makes his living now?

Nothing about this story seems rational.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Tattie Bogle
Date: 17 Jul 17 - 08:32 PM

Turn the clock back 20 or 30 years, wee baby Charlie would probably not have survived as long as he has. Thanks to modern technology, it is possible to keep children with such devastating conditions alive a whole lot longer, which, as we have seen, does throw up more and increasingly complex ethical dilemmas. Apart from whether the child is suffering pain, one does also need to examine the effects, long-term, on the mental health of parents of a child so afflicted, and/or on any subsequent children they might have. I imagine that the judge in this case will have considered all of the above. Hard though it might seem, my feeling would be to let this poor child go in a dignified way. No, the parents will never get over it, and they can never replace that child, but they may, in the long term, have a better life ahead if they can just learn to accept that Charlie's prognosis, whatever the treatment offered, is very poor..


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 18 Jul 17 - 07:24 AM

I believe the American doctor has now examined the child, and will do so again today. He will communicate his findings and assessment to the judge, who has said he will pronounce his decision on 24th July.

I agree with you Tattie, the medical ethics dilemmas nowadays brought about by advanced technology impose almost impossible burdens on the family, judges' rulings and hospital resources.

Obviously one holds the view that life is precious and sacred. But as Richard expresses above, can this truly be described as a 'life' with no awareness, no sight, hearing or movement? In the past, Charlie would indeed have slipped away quietly and peacefully, and his parents in time found some sort of peace, as did my sister after her husband's ventilator was switched off.

I am in no way 'judging', no-one has the right to do that except Mr Nicholas Francis. But we can all think deeply about this, and wonder what might be the best outcome.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Pete from seven stars link
Date: 18 Jul 17 - 11:17 AM

I'm not sure that every one does view life as sacred senoufou. According to an article I read jerry coyne and peter Singer think that not only should some at least ,disabled children, be aborted , but killed after birth as we'll . As has been expressed already though turning off life support when there is no realistic chance is not killing , though some gave called it so


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 18 Jul 17 - 11:38 AM

It's such a slippery slope isn't it Pete? Turning off a ventilator, and one could progress to aborting a foetus for having Downes Syndrome, euthanasia for the terminally ill, or the elderly, or those with dementia... I'm old enough to remember the aftermath of WW2, and the horrific things that were revealed about Hitler's Germany. Anyone who wasn't 'perfect', 'Aryan', physically 'normal' etc was deemed to be suitable for destruction, and they were killed forthwith. Utterly wicked.

I suppose some unfortunate person has to decide what is the best thing to do, but it must be horrendously difficult. The only justifiable reason would be to consider the suffering and quality of life of the person, and whether intervention to save or prolong life is in their best interests. One could never actually euthanase a human being, but I suppose one could allow nature to take its course.

I know it will sound trite, but as I have no children, I have to relate to my experiences of putting a cat to sleep. It's the most dreadful decision, but we considered the lack of hope for a cure, the suffering the animal was going through and the advice of the vet. The grief was awful, but we still stand by our actions. Please don't anyone think I'm comparing a cat with Charlie, but it does help me to understand just a tiny bit of what the Gards are going through.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Mrrzy
Date: 18 Jul 17 - 10:08 PM

I'm interested in this case, all compassion aside, because Americans are renowned for letting their children die of curable things for religious reasons. The question here is, who should get to decide the fate of a child, its parents or the legal system.

I'm only in favor of letting the Christians Scientists let their kids die rather than have an appendectomy from the point of view of the survival of the fittest.

But if I think the State should step in to protect the life of a curably ill child, does that mean I also think it should step in to allow an incurably ill one to die? *IS* it the same question?


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 19 Jul 17 - 03:21 AM

In UK, a child under 16 whose parents are of a particular religion (for example, Jehovah's Witnesses) is made a Ward of Court if they need, say, a blood transfusion or an operation needing blood and the parents object. The Court overrules the parents, who have no say. This applies to any life-saving procedure, and any harmful procedure (Female Genital Mutilation for example) The Court can forbid or enforce medical procedures to protect the child. This Law can be invoked even in the middle of the night if an emergency should arise. A Judge will be roused from sleep to exercise control of the situation.

You've raised an interesting point Mrrzy, as 'allowing a child to die' could be seen as rather different, but still, the child remains at the centre of the Court's decision, not the parents. If a Judge deems the continuation of life to be unethical, s/he is the one who orders that care be changed to 'palliative only', and this must be obeyed.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Mrrzy
Date: 19 Jul 17 - 11:26 AM

Yeah, not sure it's the same question at all.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Jack Campin
Date: 19 Jul 17 - 02:06 PM

If a Judge deems the continuation of life to be unethical

That isn't the issue at all. Nobody expects this kid's life to continue. The question is whether it's ethical for people to make a profit vivisecting him.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Mrrzy
Date: 19 Jul 17 - 02:16 PM

Not only a profit, but learn something about the disease.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Pete from seven stars link
Date: 19 Jul 17 - 04:31 PM

Certainly if this dr demands an extortionately high fee for his services , it calls into question his motivation for recommending the treatment . But from the parents POV it's understandable them fighting if there is any chance for their child


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Howard Jones
Date: 20 Jul 17 - 08:10 AM

It is entirely understandable that the parents want to pursue every possible avenue, however unlikely it may be to succeed. If Charlie were to be sent for this treatment, even if it were to be unsuccessful, they would at least have the comfort of knowing they had tried everything possible. Who can blame them for that, or fail to sympathise with their desperate situation? It must be tempting too for the judge to follow this line. However the law is focussed on the best interests of the child, not the parents. If the court agreed to send Charlie for treatment to make the parents feel better, rather than because it is in his best interests, it would be failing in its duty to him.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Nigel Parsons
Date: 20 Jul 17 - 09:16 AM

As Charlie is blind, deaf, and cannot move, it is likely that he is unable to show whether (or not) he is experiencing any pain. And apparently the doctors at GOSH cannot state for certain whether he is.
If he was crying and screaming 24/7 the parents may take a different view of whether he should be allowed to pass with dignity.
As long as he suffers in silence, I can understand them clutching at any straws that may present themselves.

A case worthy of Solomon.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 20 Jul 17 - 09:36 AM

This is what grieves me the most Nigel. The thought of that poor child suffering in silence, unable to cry, and no-one knowing.

I can quite see that the parents need to feel that they explored all avenues, but with the greatest respect to their grief, this should be about the child himself, not their feelings.

The team who are representing GOSH include:_

a consultant paediatric intensivist
a consultant paediatric neurologist
a consultant in paediatric metabolic medicine
a consultant neuro-radiologist.

Surely these professionals know what they're talking about?

Such a terrible position to be in for the Judge.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: punkfolkrocker
Date: 20 Jul 17 - 09:57 AM

my mumss next door neighbours have devoted 21 years caring for their severely autistic son..

He has some kind of awareness, which probably makes it all worthwhile for them.
But they are now middle aged and exhausted.
He is now a very big and strong young man with no sense of his own strength and temper...

My mum also loves him, but feels a little dread when he breaks loose from his parents to run up and greet her.
He has already damaged the wooden fence separating their houses.

From what I understand he has finally been accepted into some kind of college to at least give his mum and dad some respite.

I would not have strength of character to sacrifice my life to care for a child like that,
and fully understand how social media and the baying mob would respond if a parent pleaded with social services to permanently take away a child so badly mentally disabled they could not cope..

Would Charlie's mum and dad have even had time and rest to reflect on what there lives will be like if his life is saved, but he remains in a vegative state forever...???

Will the newspapers help out topping them up with cash for stories after the media hell has died down and they are left on their own to deal with it all...???


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Donuel
Date: 20 Jul 17 - 10:35 AM

When politics or religion get involved in individual life or death decisions it is always very sad.

When they get involved in organized mass death it is only war.




Governor Jeb Bush became involved in the Florida Terry Shiavo case by ordering life, despite her brain death. The villains wear angel wings and the rational husband was demonized. The people who ran the story made money. The Church made money. Jeb Bush got donantions. Terry merely died.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Mrrzy
Date: 20 Jul 17 - 10:20 PM

Terry was already dead, and so is this poor boy. I haven't heard anything new, what did the Murrican doc say after seeing Charlie?


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 21 Jul 17 - 02:47 AM

They haven't revealed his findings yet Mrrzy. But really, what can he do at this stage? The brain damage is so severe the child cannot even breathe without a ventilator. I agree that to all intents and purposes, Charlie is not actually 'alive'. In the same way that my sister's husband wasn't. He was merely a body being prevented from decomposing so that his organs could be removed for transplants. My poor sister realised that, and bravely consented to it all. But she's a doctor, and knew only too well what the 'prognosis' was. Charlie's parents are caught up in a terrible obsession of fighting for their son. The poor couple can't accept the actual situation, and one can only deeply pity them.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Iains
Date: 21 Jul 17 - 07:11 AM

With the media circus surrounding this tragic case, are the child's rights remaining paramount. The doctors have a point of view, as do the parents.
    Perhaps medical science has outpaced medical ethics. Is saving life the prime consideration or have we reached the point where quality of life should be an essential part of the equation. Euthanasia is a dirty word to some but to have a life fully dependant on others and a reliable power supply does require questions be asked.
    Have advances in technology allowed us to play God with seriously impaired life.
    Is not the medical profession a disgrace to have reached this position without any public discussion of the issues or not to have a written consensus of procedures to be followed? To go through the Courts to reinvent the wheel each time an issue like this arises is simply not good enough.
One modern version of the Hippocratic oath has the following:
"I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism."
Society as a whole needs to both ask and answer these questions.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 21 Jul 17 - 07:22 AM

Exactly Iaians. I wonder too about the Compensation Culture. Doctors must fear repercussions if they let a patient 'slip away' out of compassion, then have to be answerable to a Court about their actions.
However, one can't have doctors deciding to bump off patients with no recourse to an ethics committee/guidelines of some sort.

The so-called 'Liverpool Pathway' is a rather chilling example of withdrawing sustenance from the terminally ill in order to hasten their death.

I suppose each case has to be considered on its individual merits.

I know from what my retired sister has told me about her days as a hospital doctor that they face daily very difficult situations and conditions. The pressures are enormous (and of course, resources stretched to the limit).


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Iains
Date: 21 Jul 17 - 08:05 AM

Senoufou:
          similar issues:
http://jme.bmj.com/content/43/7/446


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 21 Jul 17 - 09:03 AM

That's an extremely interesting article Iains (sorry, misspelled your name in my last post)

The thing is, these cases are all very complex. But in Charlie's situation, he wouldn't live more than a few minutes once the ventilator was switched off. In the Briggs case, even if sustenance and liquid were withdrawn, the poor patient might linger for several days. And while PC Briggs had probably expressed his own views to his family before his accident about his wishes, Charlie is only an infant and has no wishes of his own. This throws into focus the fact that every single case is different, and any guidelines are just that.

A friend of mine has had a Living Will drawn up, in which she expresses her desire not to be resuscitated or have her life prolonged under certain conditions. She wanted me to be a signatory, but I'm afraid I couldn't bring myself to take on such a weighty responsibility.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Mrrzy
Date: 21 Jul 17 - 09:15 AM

And I assume organ harvest is a nonstarter, with no mitochondria, right?

My family has instructions to prolong my life at any cost, but I assume they will do what they want should the occasion arise.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Iains
Date: 21 Jul 17 - 02:24 PM

Senoufou."The thing is, these cases are all very complex"
Absolutely. There are no simple solutions that will please all. But I would argue that procedures dependant upon power supplies, computers and electronic monitoring allow for ever more complex procedures too be performed. This is a world that had come into being by the early 70,s
(I can be sure of this because the service facility for the computers I was using in Capetown took care of identical computers in the Groote Schuur Hospital of heart transplant fame during this time) Therefore the required revision of medical ethics to take account of these advances and their impact upon the patient have had over 40 years to evolve.By now the thoroughly distasteful situation of parent versus doctor slugging it out in the courts should have been made an anachronism. Their simply is no excuse for medical ethics not being ahead of procedures. The what-if scenarios should have been generated with all responses to the nth degree by now. If the wellbeing of the patient is paramount the reason to perform or not perform procedures should be reduced to yes-no answers to a series of questions generated to cover all eventualities. IF an ethics committee cannot perform this task they should be fired for gross incompetence.
I argue this from the standpoint that the wellbeing of the patient does not automatically mean continuation of life. Quality of life also is an integral part of wellbeing.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: punkfolkrocker
Date: 21 Jul 17 - 02:54 PM

BBC news now reporting that a judge is warning the mob outside the hospital to back off,
as their intimidating presence is upsetting parents of all the other very ill children..


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Backwoodsman
Date: 24 Jul 17 - 01:45 AM

Further to Punk's post above, the following statement was made by the Chair of GOSH on Saturday, 22/7...

"Statement from Mary MacLeod, Chairman of Great Ormond Street Hospital.

Mary MacLeod, Chairman of Great Ormond Street Hospital said:

"Great Ormond Street Hospital cares for many thousands of seriously unwell children every year, providing outstanding treatment for those who need it most.
Charlie Gard's case is a heart-breaking one. We fully understand that there is intense public interest, and that emotions run high. 

We recognise the tireless advocacy of Charlie's loving parents and the natural sympathy people feel with his situation. 

However, in recent weeks the GOSH community has been subjected to a shocking and disgraceful tide of hostility and disturbance. Staff have received abuse both in the street and online. Thousands of abusive messages have been sent to doctors and nurses whose life's work is to care for sick children. Many of these messages are menacing, including death threats. Families have been harassed and discomforted while visiting their children, and we have received complaints of unacceptable behaviour even within the hospital itself. 

Whatever the strong emotions raised by this case, there can be no excuse for patients and families to have their privacy and peace disturbed as they deal with their own often very stressful situations or for dedicated doctors and nurses to suffer this kind of abuse.

Great Ormond Street Hospital is in close contact with the Metropolitan Police and we will do everything possible to hold to account anybody who is involved in this kind of deplorable behaviour."


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 24 Jul 17 - 03:38 AM

Mary MacLeod's statement is spot-on, but one wonders why the menaces etc weren't addressed a couple of weeks ago, as the siege situation has been going on ever since this case came to the public's attention.

In court last time, it was said that the latest brain scans 'made sad reading'. It will be very interesting to hear what the American doctor has to say in the light of this.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Iains
Date: 24 Jul 17 - 04:00 AM

The court proceedings continue.
Charlie Gard's parents prepare for last-ditch battle which could ...
Telegraph.co.uk-49 minutes ago.

The sooner this tragic case reaches closure the better. Prolonging it puts the parents under incredible pressure and I can only feel sorry for them. I cannot think how I would feel or act in the same position.
The medical team must also be under strain,and as for those protesting I have nothing but contempt. They must have a real sense of achievement knowing that they are disrupting proceedings at the premier children's hospital in the UK.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 24 Jul 17 - 04:58 AM

You're so right Iains. The ignorant idiots have managed to turn a very sad situation into a major disaster. Charlie's Army indeed! As if they know better than a whole team of world experts in the field of paediatrics.

I fervently hope that today's proceedings put an end to the whole circus, for everyone's sake, but principally for the baby's.
At the centre of this appalling mess is a young infant, and someone needs to take charge and bring it to a conclusion.

I pray that the parents can eventually heal and come to terms with their grief, if the decision is to withdraw intervention and go for 'palliative only'.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Iains
Date: 24 Jul 17 - 06:45 AM

Senoufou.You articulate the situation far more eloquently than I. I suspect you summarise the feelings of all of us on this forum.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 24 Jul 17 - 06:57 AM

Thank you Iains. I actually hesitated about starting this thread, because as Steve and others have pointed out, it's not really for us as uninvolved bystanders to comment. But it's been troubling me deeply for quite a while, and it's reassuring that people feel concerned too.

As you said in an earlier post, with all the advances in technology in medicine, one would have thought the ethics this raised would have kept up. But I suppose human emotions and instincts will always to some extent override rules and guidelines.

Let's hope today brings some sort of resolution. I read just now that they've shortened the final hearing to one day only (not tomorrow as well, as initially planned) and that the Judge (poor chap!) has indicated he would like all parties to be in agreement.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Iains
Date: 24 Jul 17 - 08:04 AM

This is a unique occasion when I can feel for the judge as well. A terrible decision to have to make.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Mrrzy
Date: 24 Jul 17 - 09:46 AM

I just read in WashPo the parents have decided to end the legal fight to keep the poor boy alive. Those poor, poor parents. The boy is probably not suffering, but those poor, poor parents. And the poor hospital workers, I mean really, death threats?


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 24 Jul 17 - 01:23 PM

The poor father read out his statement to the Press very bravely. It seems they've accepted the inevitable, poor souls.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Tattie Bogle
Date: 24 Jul 17 - 01:49 PM

Yes, a sad end to a very sad situation: inevitable, and unenviable. Social media has a huge amount to answer for. I sincerely hope that there will be no more backlashes or adverse comments, but just leave this poor baby and his parents in peace to cope with their loss.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Andrez
Date: 24 Jul 17 - 06:01 PM

Rest in peace Charlie.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 28 Jul 17 - 01:35 PM

I see from the News that Charlie has died.
I hope and pray his poor parents eventually find peace.
RIP Charlie.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: punkfolkrocker
Date: 28 Jul 17 - 02:05 PM

I expect the fanatical idiots in charlie's army will move onto the next very ill baby to exploit for their own dysfunctional emotionally hysterical needs....

I notice one particular 'ring leader' has a few petitions on the go at the moment... 😣


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Senoufou
Date: 28 Jul 17 - 02:39 PM

The disruption to the everyday routine at GOSH must have been horrendous. There are many very poorly children in there, together with their very worried parents. No-one needed this fracas outside, threats to staff etc.

I feel that once a certain time has elapsed, there should be an in-depth review of the whole situation, with a view to examining how/if this could have been handled differently, and putting in place more stringent rules and guidelines.

Any parent losing a child has my sincere sympathy. One can only pray for closure and eventual peace for all concerned.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Mrrzy
Date: 28 Jul 17 - 03:51 PM

Why they even moved him... anyway. Not my decision. At least it's over for the kid... let's see if the parents can have it be over for them, poor folks.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: Tattie Bogle
Date: 28 Jul 17 - 06:05 PM

Re Senofou's last post: yes, RIP Charlie Gard, and sincere condolences to his parents.
It has been a very tough time for all concerned: modern medicine has led to higher expectations, sometimes unrealistic, it has to be said. I was a Paediatric house officer in the 1970s and later, a GP. We faced ethical dilemmas, but none as complex as this. And such discussions were largely conducted in private, in close consultation with parents and other interested parties, not emblazoned across the world through "social media".
Please, let's have some peace and closure now. RIP Charlie.


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: MikeL2
Date: 29 Jul 17 - 10:37 AM

Yes RIP Charlie.

I hope closure will happen soon for the parents; but I have a feeling that there is more to come in this sad story.

MikeL2


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Subject: RE: BS: The Very Sad Case Of Charlie Gard
From: akenaton
Date: 29 Jul 17 - 11:27 AM

I agree with PFR.


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