Charlie Gard

[Super_horns]

Where do you stand on the current plight of this poor baby?

I feel for the parents as having any young child so ill is distressing but what chances are there of this treatment in the US realy helping young Charlie have some sort of life?

Ofcourse the parents want to do all they can to somehow help their son but are the doctors really just saying "we have done all we can" and not much else can help.

Are the parents just clinging onto the hope a miracle can happen or do they have a right to expect more treatment if it's there?

 

[Veggie Legs]

If there's no realistic chance of him ever getting better, and presumably that is the medical opinion, then I agree with the doctors that he should be allowed to die. I don't think it does anyone any good, least of all Charlie, to prolong his life when there's no chance of him ever having any quality of life.

 

[claret50]

My son who was born in August 1968 at Bury st Edmonds hospital, died in Great Ormond street hospital (GOSH) in April 1969 aged 7½ months, he died from portal vein thrombosis and all we were told was that nothing could be done for him, we lived in Suffolk in those days so the drive to see him every other day was a traumatic journey, when he finally closed his eyes for good we were obviously devastated, had we'd been given the opportunity to some magical cure - no matter how impossible the odds - we would have jumped for joy, the memory of carrying his tiny white coffin down the aisle in the local church will stay with me forever.

I sincerely hope that the parents of little Charlie get the chance to try everything to preserve his life.

 

[Super_horns]

Sorry to hear about that!

You are right - the parents will try take any chance possible to save their child.

 

[oakroader]

who are we to judge...life is precious in all its forms....
taking a dog to be put down is bad enough...let alone a child!
medical science is amazing and who knows what the future will bring?
no one should decide on behalf of a parent the right to kill an offspring
unless the advise is to stop pain and suffering to whoever is involved
a chance,how ever small,is a chance to be taken,before any such difficult decisions
are to be considered,no matter how well intentioned the response from other parties!

 

[Lamby]

All us staff there have been told we can't comment on the story. Well annoying having all the press stuck outside getting in the way.

 

[The Mustard Tiger]

It's such an awful scenario and as someone who has become a dad this year I can only imagine what the poor parents are going through. Personally, I trust the medical experts and their opinions on the matter. What I don't think helps is when people like Donald Trump and the Pope publicly wade in with their opinions when neither is educated or informed enough to do so.

 

[Super_horns]

It's such an awful scenario and as someone who has become a dad this year I can only imagine what the poor parents are going through. Personally, I trust the medical experts and their opinions on the matter. What I don't think helps is when people like Donald Trump and the Pope publicly wade in with their opinions when neither is educated or informed enough to do so.

Mainly on religious grounds rather than any political I suspect and Trump is trying to score points politically of course.

 

[Pagnell]

I was speaking to my wife about this a few days back. It really is an impossible situation, and a difficult one to make a judgement call on. But I thought about it and for me it's a scenario where the best judgement is made without bringing personal attachment and emotion into the equation, not to mention the presence of medical expertise. It's right the doctors need to make the decision here, because the parents aren't in a position to do so, either emotionally or medically.

I understand perfectly why the parents would want to keep fighting and any possibility of a cure, no matter how small and how partial, would be something they will do anything to achieve. But I feel that they are perhaps in fighting for this they may have lost sight of what is best for the baby, as terrible as that is to say. As indicated though, that is understandable given the terrible circumstances. But as the medical professionals have indicated, the parents and their supporters are simply delaying the inevitable, and are arguably causing Charlie unnecessary pain and distress.

 

[smat]

I was speaking to my wife about this a few days back.

For god's sake man, they may not always be well-behaved but there's no way you should even be considering this.

 

[Super_horns]

Seems to be getting very bitter and messy which is sad.

More about either side getting their argument in than about poor Charlie himself.

 

[Cornish Piskie]

This will be a long post but I feel it is something that deserves deeper scrutiny than most issues. Please bear with me or click off now.

The saddest aspect of all this is that the only person who doesn' t have any say in what will happen to him is Charlie himself. Of course, he is an infant who is in no position to say anything at all. His fate rests in the hands of his parents and the State.

His parents are in the utterly awful position of being torn apart by emotion and the dreadful dilemma of having to decide what's best. It’s only natural that they will cling to any straw, no matter how fragile to save their child.

But is the best thing for Charlie the same as what is best for his parents? In British law it is the interests of the child that are paramount and that can bring the wishes of the parents into conflict with the State. The law – having taken advice from the best clinicians and other experts available – has decided that Charlie’s life is not viable and will not allow his parents to take him the USA for treatment which, though highly experimental and unproven offers the slimmest of chances that he may be saveable and could survive possibly into adulthood.

Who wouldn’t cling to that..? Who wouldn’t take that risk..?

But other powerful and vested interests have become involved and we can’t be sure that they are concerned with what is in the best interests of Charlie.

Let’s deal with his condition first.

Charlie was born with Infantile Onset Encephalomyopathy Mitochondrial DNA Depletion Syndrome (MDDS) which is a progressive condition. It causes muscle weakness and brain damage. If anybody would like me to explain this condition in more detail I’m willing to put on my professional hat and do so, but simply put, Charlie has the Encephalomyopathic form (there are three kinds of this condition) which is often fatal in very early age but although there are cases of sufferers surviving into adulthood (median survival is into the early 20's), the clinicians at GOSH are convinced that in Charlie's case, he would not survive if his life support was withdrawn.

He has persistent epileptic seizures as his brain function deteriorates. He is deaf, has no ability to breathe or move or open his eyes on his own. His heart and kidneys are failing and it is possible – some doctors say likely - that he is experiencing pain. There is no effective treatment for Charlie’s condition. The clinicians who have reviewed his case all agree that he will die. A bald, harsh statement to make, but regrettably, this is his fate. I wish it were not so, but it is.

The doctors at GOSH are keeping him on ventilating machinery and are providing palliative care. If that is withdrawn he will quickly expire and his suffering will be over.

Enter the outside interests.

Who are the people who are offering Charlie’s parents hope..?

American doctor Hirano Michio of the University of Colombia has been given permission to evaluate Charlie and is required to report back to the court by 25 July. We must await what he has to say. It should be noted that Dr Michio initially told the court that it was "very unlikely that he will improve" with the proposed experimental therapy. He also noted that the treatment proposed had not been used in patients with the same mutation as Charlie Gard, nor with patients with encephalopathy. There have been no published case studies of the proposed treatment in any patient group.

Nucleoside bypass therapy is an experimental treatment aimed to restore the normal levels of deoxynucleotides (dNTPs) in mitochondria. There is no evidence that this can work so what sort of risk are the parents taking…?

And who stands to gain from it..?

The pharmaceutical industry is an extremely complex business which has to comply with a lot of legislation in every country in which it operates. Research is expensive and the outcome does not always result in an efficacious remedy..... and thus a profit. Clinical trials take a very long time, they then have to pass independent scientific evaluation. The results must then be published in peer-reviewed publications before being put to government agencies for approval and finally being presented at major medical association meetings.

The opportunity to treat a live patient such as Charlie is a godsend to any company attempting to find a treatment for any condition. To be able to conduct clinical trials on live sufferers in the early stages of research can cut years off R & D, and positive results can carry a great deal of weight when going through the evaluation process.

Even if the subject dies, the researchers can evaluate why that happened and learn from that experience. Even failure carries a benefit to the researchers.

Some suspect that Charlie would be less of a patient and more a lab rat. That situation would be unlikely in my opinion because there would be independent supervision, but it cannot be denied that if he were to die, the parents would be likely to come under pressure to allow post-mortem experimentation. They may even be asked to donate his remains. Once the lab has him, they won't want to let him go.

To obtain treatment in the first place, Charlie’s parents would have to sign disclaimers which could give wide ranging powers to those treating him. I’m not suggesting that they would abuse the child. The research would be monitored and supervised by an independent body, but the nagging question that just won’t go away through all this is: Is Charlie suffering..?

The doctors and scientists of Colombia University know their ethical restraints, but there is still risk involved in handing Charlie over to a company who, at the higher echelons of the business, away from the laboratory, are primarily driven by the profit motive. That uncomfortable aspect cannot be ignored.

And then there are those who have other ulterior motives for pursuing this issue.

An evangelical preacher, Rev Patrick Mahoney of the Christian Defence Coalition has made it his business to become involved. He recently met with a senior official at the White House to discuss the case. This has led to concern that he is exploiting the case for political / religious gain.

He has previously been jailed for violating an order that prevented him from demonstrating in front of abortion clinics.

In my opinion, I consider it dangerous when religious organisations take an interest in such cases. They add fuel to the fire and deflect the focus away from the real issues by using religious fervour to hype emotion to excessive levels.

The media is involved too. The Sun has made Charlie a cause celebre, which has helped to raise money for his treatment, but at the same time has drawn people with no knowledge or experience of the wider issues involved into the fray. Noisy, emotion-driven demonstrations prompted by rabble-rousing headlines put pressure on decision makers and do more harm than good. Making a rational decision becomes more difficult.

Charlie has been turned into a football to be kicked around by those with a vested interest and others who have flocked to what is becoming a media event.

His parents are in a terrible position. They must decide whether to continue their campaign for experimental treatment and they’re damned if they do and damned if they don’t.

If they drop their campaign they will be accused of giving up… of quitting…. And there is little doubt that trolls will jump on the bandwagon to call them child murderers. They will be condemned in the court of Social Media. Trial by Twitter at it’s most repulsive worst.

Is their situation not bad enough..? Yes, it is. But it's possible that it could become a whole lot worse if social media turns against them.

If they do continue their campaign they run the risk of prolonging Charlie’s suffering in a forlorn hope. They may be handing their son over to vested interests who could exploit him for financial, political or religious gain rather than for his benefit.

What Charlie needs is a humane, reasoned, responsible judgement which is genuinely in his interests.

There is no good in this case. Only a poor little boy who I wish would find some peace and rest, free of pain. Soon.

Thanks for bearing with me through this lengthy post.

 

[Super_horns]

Looks like Charlie and his family will get the chance to go to the States.

 

[claret50]

I'm pleased for them.

 

[AFCB_Mark]

It seems as though the legal case will cease since the US neurologist Dr Hirano said he was no longer willing to offer Charlie the experimental therapy after the results of a new MRI scan last week. Presumably it sadly means Charlie's young life is now very close to it's end.

Over 1m raised in funds will be put into a charity founded in Charlie's name.

 

[Super_horns]

Sad but maybe inventible.

Glad to see the money raised will go to a good cause though.

 

[Cornish Piskie]

It is a terrible tragedy and if there had been any genuinely realistic chance of saving him I'm sure everything would have been done.

The medical profession will, I'm certain, ensure that Charlie's dignity is properly preserved as he expires. That's about as much as anybody can do for him.

The parents must be allowed to say their goodbyes, and then be given the space and to grieve in private. Please, no media circus or internet judgementalism.

Rest in peace, Charlie. We're all sorry that nothing could be done for you.

 

[Veggie Legs]

It seems from the statements from GOSH and the judge today that the American doctor who's been pushing this experimental treatment has never seen Charlie, has paid little attention to the case, and has a financial interest in the treatment. What a prick.

 

[Super_horns]

There have been a few outsiders who seem to have taken advantage of the parents grief and high jacked proceedings.

Not the only high profile event in recent times that has happened to either.

 

[Super_horns]

Now they are disputing how and where he should be allowed to die.

All very sad and bitter.

I suspect we won't hear the last of this even after Charlie does pass away.

http://www.bbc.co.uk/news/uk-england-london-40716292

Again I can see both sides' point of view but he should just be allowed to die peacefully and not in a media storm.

 

[smat]

All very sad and bitter.

I suspect we won't hear the last of this even after Charlie does pass away.

Not if you have anything to do with it.

 

[Aber gas]

Not the only high profile event in recent times that has happened to either.

What event are you referring to?

 

[Super_horns]

Some have said that the Grenfell Tower tragedy has been high jacked a bit by people with alternative motives..

That is probably for another debate (and might have debated already been already..) though!

 

[Stevencc]

Hold on, all this fuss is over a mite?

 

[Aber gas]

Some have said that the Grenfell Tower tragedy has been high jacked a bit by people with alternative motives..

That is probably for another debate (and might have debated already been already..) though!

The people involved with helping the victims of Grenfell get justice and help have the alternative motive of stopping poor people being murdered in avoidable fires. Not sure what you mean by hijacking tbh.

 

[Super_horns]

Fair point - just some (probably depends on what paper/news you read!) have suggested there has been a political agenda going on but that is just one view point.

Doesn't mean they are right and no doubt the majority are worried about ensuring such tragic events can be avoided in the future.

 

[Pagnell]

I'm actually a little pissed off that GOSH has been turned into some sort of evil entity for rightly looking at this situation from a medical perspective and making decisions based on that rather than emotion. The parents haven't helped this, with emotive claims like today, where they said to the press that the hospital had "denied them their final wish".

 

[silkyman]

It's terrible that GOSH has been painted in a bad light here. That staff have been getting death threats is just so, so wrong. On every imaginable level.

This is a horrible situation for all involved and as a dad I can understand the parents utter determination to do everything they can.

But I also believe that the parents 'rights' should not supercede medical expertise. Do me and her mum know best when it comes down to getting her to sleep at night, or her favourite dinner? Yes. Do we know best when we tell her not to do cartwheels in the street and to keep away from the hot oven? Yes. Do we know best when it comes to treatment of potentially fatal diseases... No. No we do not.

As a parent, I know what I don't know, and any idea that a parent's wishes are the be all and end all is very dangerous.

Because down that road lies anti-vaxxers, risking others by diminishing herd immunity. Down that road lies hippy weirdos convinced that homeopathy will cure lukemia and down that road lies religious fruitcakes refusing blood transfusions for their kids.

There is an argument that letting him go for this experimental treatment would be beneficial even in failure as a learning excersise, but that feels a bit Dr Mengele for my liking.

 

[Pagnell]

Just been confirmed Charlie has passed away in a hospice.

 

[Super_horns]

Should be allowed to rest in peace now.