(as a disclaimer… This may come across as callsor crass. I’m not a parent. Don’t want kids of my own but love my nephew even though he is reluctant to ride his like-a-bike.)

It’s a very sad story.

Life sucks.

The parents have been dealt a shitty hand, but what are they hoping for even if their child does receive extra care? He is never going to have a normal existence and will need their support for the rest of both their’s and their son’s life (which they cannot provide if he outlives them both).

And why should the opinion of either Trump or the Pope hold any sway?

I believe they should be allowed to do whatever they want to “save” their child, but on the proviso that the cost is met out of their pockets or those who support them.

The NHS is a wonderful thing, but I think there needs to be a clear line where help ends and those resources go towards the greater good of the population.

Trump jumps in because he stupidly thinks it’s an indictment of the NHS, the Pope jumps in because he thinks his boss is in charge.

All in all, too many people with opinions and a market for them amongst their fans.

Yeh I don’t get all this either, there must be loads of really sick kids (which is terrible for them and the parents) why is there such a media frenzy about this one in particular?

I believe they should be allowed to do whatever they want to “save” their child, but on the proviso that the cost is met out of their pockets or those who support them.

Which is where they are, more or less.

Trouble is, there is room for Quackery were you have cash, and someone else has a ‘cure’

The mum was on tv over the weekend, talking how a medicine, taken orally, could fix their son, and they had to go to the US to get it.

Could they not post it to the UK? It would be eaiser on the child than a 10 hour flight. And if he responded then all’s well.

I get the feeling they are being fed a line by people who know how desperate they are, but love the smell of wellwishers money on them.

the Pope jumps in because he thinks his boss is in charge.

Then his boss is a next-Tuesday if he allows babies to be born that have no chance of a natural life.

I think that medical science sometimes goes too far when it comes to extending life. I think the UK doctors and courts have it right in this case.

I think that medical science sometimes goes too far when it comes to extending life. I think the UK doctors and courts have it right in this case.

+1 (I think)

As a parent of two kids I can’t begin to imagine how awful the last 6 months have been for them.
I also think the situation where trust between parents and doctors has broken down to such an extent that the child has been made a ward of court is so sad.
I don’t know how I feel about the ‘experimental’ treatments being offered to them. Its fairly clear they can’t offer a recovery, and the best they can hope for is a severely disabled person who’ll need round the clock care for the rest of his life.
I believe the Doctors at GOSH are at the top of their game, and their opinions need to count for something.

I guess Charlie has a right to every opportunity that can be offered to him, and I honestly don’t know how I’d feel/what I’d do in his parents position.
In some ways it feels like any further treatment now is too little too late?

I get the feeling they are being fed a line by people who know how desperate they are, but love the smell of wellwishers money on them

+1

I’ve got no answers, but my gut feel is they should let nature take its course.

I guess the parents want to be able to live the rest of their lives knowing/believing they did everything possible to give him life.

Edit. I know very little about the case and have no opinion on their actions. 😀

I guess the parents want to be able to live the rest of their lives knowing/believing they did everything possible to give him life.

+1 agreed.
However, I think Quality of life’ should be considered.
FFWD 18 years, would a severely disabled Charlie thank them for it?

Such a difficult and horrible situation.

Really sad story and I would imagine put in the same position as a parent i would want to explore every opportunity to save my child. But there comes a time, and I would imagine they are past it now, where you need to take the lead of the caring professionals and do the right thing and let the poor wee fella go.

America is full of see you next Tuesdays. One of them is sadly the president who for this cruel and cynical political interference alone needs force feeding his own bollocks. Plenty more in ‘fringe’ medical or medical/religious groups who are either delusional about their own abilities or just plain pray on the vulnerability of desperate people for their cash. The pope – not very helpful. But then again he’s the pope – being not very helpful is a speciality.

GOSH are in a tricky spot now – hold the line and get blamed when he dies. Let him go and get blamed for delaying his treatment when he dies (which seems inevitable) in the knowledge that they also prolonged suffering.

Sadly it a personal tragedy that just brings the nutters out to increase the misery and give false hope to some very unlucky people.

I guess the parents want to be able to live the rest of their lives knowing/believing they did everything possible to give him life.

The evidence for the treatment they have in mind is sketchy to say the least, and the chances of any quality of life are extremely small, given the existing brain damage.

But I’d agree with the parents, even to the extent of pointlessly prolonging life, as long as it did not divert scarce resources from another more treatable case and, most importantly of all, as long as the lad is not currently in tremendous pain, and likely to remain so even if the treatment is ‘successful’ in keeping him alive.

If this is the case (and GOSH believes it may well be), then I’m afraid IMO the parents wishes need to be overridden so his suffering can end.

Having recently been involved in the world of palliative care, I feel the parents need to face up to the sad realisation it’s time. The numerous doctors involved will not have come to their decision lightly. I know one will always try and do as much as they can for a loved one, but they risk causing further distress, suffering and harm for nominal gains.

There is a time for hope, and clutching at any straws that one can, but eventually you have to accept you’re torturing yourself, and the person in question, by not letting go.

Trouble is, there is room for Quackery were you have cash, and someone else has a ‘cure’

This, it seems a week doesn’t go by without someone trying to raise a huge sum of money to send someone abroad to get care that the NHS doesn’t provide like it’s some 2nd class service that kills people for the sake of ‘computer says no’.

The truth behind these miracle cures is often that they’re either experimental and untested, or more likely they offer a sub-10% chance of extending life for a few weeks or months and whoever is in charge of their care has agonised and considered their treatment for a long time and decided either the treatment offers almost no chance or success and doesn’t warrant making the patient suffer it, or indeed it offers such a tiny chance of success it’s not worth the massive cost of treatment.

I can’t blame the parents, but trying to make political mileage out of a dying child is sick.

I’m not quite sure how he would ever be capable of even understanding what has happened, let alone responding in any way. “severely disabled” hardly goes far enough – and nobody is suggesting there is any chance of him ever recovering from his brain damage, which appears to preclude him ever sensing the outside world or moving under his own accord. His parents might want to prolong his life, but it’s not really life as we know it.

The best thing for everybody – including his parents, or maybe even particularly his parents – surely has to be to let him go with as much dignity as possible.

From http://www.bbc.co.uk/news/health-40554462

GOSH did apply for ethical permission to attempt nucleoside therapy on Charlie.
By the time that decision was made, however, Charlie’s condition had greatly worsened and the view was that his brain damage was too severe and irreversible for the treatment to help.

it seems the time for such therapy being useful has passed, and that GOSH did do what they could to provide it to him whilst it would have still been useful (but it was tricky because it hadn’t been through the normal required testing process). Sometimes we just have to accept that modern medicine hasn’t quite advanced enough to treat things.

Quality of life and whether the patient is experiencing pain are the big factors for me and I don’t think you can solely leave it to the parent to decide how long to continue treatment as emotion can cloud the judgement over what’s best for the child.

If pain is being experienced (and I think in this case that’s not clear) then I think the medical profession should be able to over-rule the parents and step-in to ensure the parent’s emotional state isn’t causing undue suffering to the child.

As for experimental treatments, that’s a trickier one. Surely best case end result has to be a factor but then who decides what a reasonable/minimal quality of life is? From what I’ve read on this case his quality of life wouldn’t meet my own definition of reasonable but for others perhaps life is so precious that even having a machine breathing for you for the rest of your life (as well as being blind and so brain damaged you likely can’t understand anything about your situation) is enough to warrant the treatment?

The involvement of Trump is an interesting one as he is quite clearly jumping on the bandwagon to get himself good press as this case is very much in the public eye. This man should be ignored as much as possible and is quite clearly a moron. This is the man who is taking away publicly funded healthcare from his own citizens but taking an interest in one public case in a different country.

What a colossal ****.

https://www.theguardian.com/uk-news/2017/jul/10/patrick-mahoney-us-pastor-campaigning-for-charlie-gard-has-history-of-publicity-stunts

aracer – Member

freeagent » FFWD 18 years, would a severely disabled Charlie thank them for it?

I’m not quite sure how he would ever be capable of even understanding what has happened, let alone responding in any way. “severely disabled” hardly goes far enough – and nobody is suggesting there is any chance of him ever recovering from his brain damage, which appears to preclude him ever sensing the outside world or moving under his own accord. His parents might want to prolong his life, but it’s not really life as we know it.

The best thing for everybody – including his parents, or maybe even particularly his parents – surely has to be to let him go with as much dignity as possible.

Agreed.

The truth behind these miracle cures is often that they’re either experimental and untested,

Indeed, in this case GOSH have gone back to court today to ask the judges to look again at the case based on evidence that is so untested that it hasn’t even been published/peer reviewed yet.

I’m struggling to see that he has any quality of life at all other than existence – it’s fundamentally no better than being in a permanent coma (arguably worse). I struggle to understand even parents clinging to this – it’s not an existence I’d want for myself, and certainly not for my kids – I am a parent, and it would be heartbreaking, but the decision would be relatively easy if that was the future for one of mine.

I’m curious whether those other than his parents supporting him being kept alive understand the situation he is in, or whether they too just have strange standards (well completely different to mine) that value existence for its own sake.

If his parents had done to a dog what they are doing to their own child, they’d be in court for cruelty and neglect.

It must be very hard for them, but it is long past the time when they should have started putting their child’s need to be out of pain and discomfort above their own needs and wants.

Pope/Trump and that American pastor are shameful in their use of this issue.

and now the argument appears to be over whether such treatment would provide him with 10% chance of continued existence rather than the 0% chance they’d previously thought. It seems a funny thing to be arguing about in the circumstances.

Jamie – Member
What a colossal ****.

https://www.theguardian.com/uk-news/2017/jul/10/patrick-mahoney-us-pastor-campaigning-for-charlie-gard-has-history-of-publicity-stunts

I’ve nothing to add, other than the parents should definitely be avoiding associating themselves with reptiles like that fella.

I’ve nothing to add, other than the parents should definitely be avoiding associating themselves with reptiles like that fella.

The parents did not seem like the sharpest tools in the box though. Add desperation and probably exhaustion and they are easy prey for these throbbers.

I’m struggling to see that he has any quality of life at all other than existence – it’s fundamentally no better than being in a permanent coma (arguably worse). I struggle to understand even parents clinging to this – it’s not an existence I’d want for myself, and certainly not for my kids – I am a parent, and it would be heartbreaking, but the decision would be relatively easy if that was the future for one of mine.

I’m curious whether those other than his parents supporting him being kept alive understand the situation he is in, or whether they too just have strange standards (well completely different to mine) that value existence for its own sake.
I feel exactly the same, however I am part of a dad’s group which has many American members, quite a few of them see the decision as the government / NHS playing god and it wouldn’t happen in the US. The medical profession ‘plays god’ every day by keeping millions alive or from have life change ailments, by that standard no one should receive any medical treatment.
Heartbreaking case, hopefully given time the parents can looks back a little more objectively to see it is the correct decision.

Trouble is, there is room for Quackery were you have cash, and someone else has a ‘cure’

Family friend paid £30k to take her teenage son with terminal cancer to a retreat in Indonesia where they claimed to cure cancer by getting him to spend hours every day jumping up and down. He was physically and emotionally knackered, she was utterly desperate.

He still died a few weeks later.

😯 I’m guessing they’re ignoring the “playing god” due to lack of money which happens with medical treatment in the US?

I feel exactly the same, however I am part of a dad’s group which has many American members, quite a few of them see the decision as the government / NHS playing god and it wouldn’t happen in the US.

Nope it would be the insurance company instead. If you are lucky enough to have cover that is.

I’m curious whether those other than his parents supporting him being kept alive understand the situation he is in, or whether they too just have strange standards (well completely different to mine) that value existence for its own sake.

I might be being a little disingenuous here but I suspect quite a sizeable proportion supporting them do so in a spirit of post truth disregard for experts and the thought of a fairy tale walking talking happy ending ‘defying science’. That being a little ‘fighter’ and given the chance to keep on ‘fighting’ and a few prayers is all that’s needed.

I agree convert – Hollywood and TV sets a unrealistic expectation that this kid has a chance of a complete recovery if they can just find the right medication.

Reality is far sadder. 🙁

There was a paediatrician in the paper the other day. Said that the drug, even if it works, will only stabilise him and not fix anything.

Having spent over 100 days in a neonatal ICU with a very ill, very premature son, I can see how they may have got to the position they are in. Normal is a relative thing.

I think the courts decision is the right one, and I would hope in a few years with some distance and contemplation they will see that too.

Trump and the others can **** right off though. They aren’t helping anyone but themselves.

Trump is well known for his love of children, definitely not just being manipulative, oh no!

[video]https://www.youtube.com/watch?v=az6wof3iyIw[/video]

Impressive sense and pathos on this thread. Nothing much to add apart from agreement with everyone here so far.

That’s exactly what it’s saying in all the articles I’m reading. The damage is done, nobody at all (who knows anything), not even those offering the suggested treatment, is suggesting he will get any better than he currently is.

I also suspect convert is right – from what I’ve read I suspect the parents are included in the irrational hope of life beyond lying in a bed unable to sense and unable to move.

am i the only one who opened this thread expecting a joke..

..Prince Charles, Trump and the Pope are all in a plane…….

…kill, marry, snog

Nope it would be the insurance company instead.

Your insurance company in the US doesn’t just hand out money. They have legal teams that fight tooth and nail to get out of having to pay out. In this case, they would press the doctors to prove the medical case for the treatment, which they would be unable to do for the same reasons as the British doctors. So they wouldn’t pay out.

Plus their cover would be limited to less than the cost of this particular treatment, as I understand it.

It’s worth watching the Louis Theroux documentary on end of life care in the USA (on Netflix if you didn’t see it originally).
There seems to be a tendency to keep offering every possible treatment, even when the potential benefits are very questionable. I guess there’s an obvious financial incentive if the patient can pay, but part of it also seemed to be about “consumer choice”. One of the people he followed was effectively killed (after one day of treatment) by the last chance chemotherapy he elected to take, when it was offered by the doctor. It looked like he would have been better making the most of his last days with his family, instead of starting a treatment that had little or no chance of success.

Having recently been involved in the world of palliative care, I feel the parents need to face up to the sad realisation it’s time. The numerous doctors involved will not have come to their decision lightly. I know one will always try and do as much as they can for a loved one, but they risk causing further distress, suffering and harm for nominal gains.

There is a time for hope, and clutching at any straws that one can, but eventually you have to accept you’re torturing yourself, and the person in question, by not letting go.

Very well put Jamie and I completely agree with what you are saying. Then again I don’t quite know how my mind would be operating under those circumstances. Really feel for the parents and the emotional turmoil that they must be going through. My son had some complications in his first eighteen months (nothing remotely liked this) and I wasn’t very rational for some of that time.

Trump and his popeness can both do one though. They are both spotlighting this for their own reasons. There is nothing altruistic about it. They are providing false hope and that’s not a very nice thing to do in my opinion