BS: The Very Sad Case Of Charlie Gard

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.

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

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.

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.

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)

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?

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.

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.

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.

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.

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.

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.

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.

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.

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.

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?

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.

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.

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.

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.

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.

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.

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?