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Charlie Gard ...?

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By (user no longer on site) OP   
over a year ago

Your thoughts ....?

Apparently the Vatican and Donald Trump have offered to help provide treatment UK doctors and the courts feel would prolong the child's suffering

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By *rightonsteveMan
over a year ago

Brighton - even Hove!

He's going to die

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By (user no longer on site)
over a year ago


"He's going to die "

We all are....some sooner than others but its inevitable. People die, life goes on.

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By *rightonsteveMan
over a year ago

Brighton - even Hove!


"He's going to die

We all are....some sooner than others but its inevitable. People die, life goes on. "

Yes, I know. Thank you for your contribution anyway.

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By (user no longer on site)
over a year ago

Poor child,whish i had the money too help

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By (user no longer on site)
over a year ago

It's positive news!

I'm happy for the parents......I'd be the same!

They've raised interesting debates regarding taking a child to hospital......does that ultimately remove parental rights?

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By *iamondsmiles.Woman
over a year ago

little house on the praire

As a parent i couldnt imagine being in their shoes. There comes a time when you have to say goodbye.

Also are trump and the vatican going to support all the terminally ill children we have in this country

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By *ittle_brat_evie!!Woman
over a year ago

evesham


"He's going to die

We all are....some sooner than others but its inevitable. People die, life goes on.

Yes, I know. Thank you for your contribution anyway. "

To be fair neither of your contributions were brilliant. We know he is going to die but he is just a baby and it's a territory sad story.

Seems like GOSH have fought these parents so much they don't know when to stop. They weren't even allowed to take him home when they thought they had no choice but to let him go. The hospital denied their request.

Although perhaps that was for the best if he is still with them.

It's a terribly sad story and such an emotive one as well. The poor parents having to fight through every court available to them to simply do their best for their child.

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By *izzy RascallMan
over a year ago

Cardiff


"As a parent i couldnt imagine being in their shoes. There comes a time when you have to say goodbye.

Also are trump and the vatican going to support all the terminally ill children we have in this country"

I wouldn't of thought so but I imagine we will.

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By (user no longer on site)
over a year ago

I hope he's not suffering. I hope his parents can move on.

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By (user no longer on site)
over a year ago

Hospitals turn off life support machines all the time. It's far more more emotive with a baby but the family are just delaying the inevitable. It's heartbreaking for all concerned

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By (user no longer on site)
over a year ago

Trump wants to be able to turn around to the US and say "look how the healthcare system doesn't work in the UK, they can't even help babies" - He has an agenda and using a dying baby isn't beneath him...

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By (user no longer on site)
over a year ago

I feel he should be allowed to die. It's very sad but he is terminally ill and no new treatment is going to change this.

PTU xxx

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By (user no longer on site)
over a year ago

i can see both sides - i think most of us can - i do want to ask though why the medicine cant be brought to him as opposed to him having to endure the journey

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By (user no longer on site)
over a year ago


"Poor child,whish i had the money too help"

Ah you googled him

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By *uby0000Woman
over a year ago

hertfordshire

they have to do whats best for the baby sometimes letting go is the best way forward

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex

I'm glad I don't have to make this decision from either side.

Whether or not the medical profession should be allowed to override parents is a very tricky question.

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By (user no longer on site)
over a year ago

I was at a conference recently where I heard a top American neuro children's doctor discuss the ethics of his job.

From the reports I have read today the parents of a child in America with the same issue has had the treatment America/Trump is offering. He is still alive after 4 years, and can now "move his hands, feet and fingers".

The specialist I heard speak discussed the quality of life.

Incredible speech, with no right or wrong answers.

He also raised the question of who is best qualified to decide. The courts with no medical training? The family with no medical training but very emotionally attached? Or the doctor, who has the medical training but has no part in the child's life after treatment?

Whoever, and whatever is decided I wish the best for the family. I'm not a religious person but I thank god my children were born happy and healthy.

Sara

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By (user no longer on site) OP   
over a year ago

Apparently Great Ormond Street are reviewing new details of potential treatment from overseas

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By (user no longer on site)
over a year ago


"Apparently Great Ormond Street are reviewing new details of potential treatment from overseas "

Which is good news.

However it's a sad world we live in when we rely on social media and the press to highlight our plight in order to get help.

The reality is, we live in a fragile inequal world. Thousands slip through the net every day and depart quietly with noone batting an eyelid other than those that new them.

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By (user no longer on site) OP   
over a year ago


"Apparently Great Ormond Street are reviewing new details of potential treatment from overseas

Which is good news.

However it's a sad world we live in when we rely on social media and the press to highlight our plight in order to get help.

The reality is, we live in a fragile inequal world. Thousands slip through the net every day and depart quietly with noone batting an eyelid other than those that new them. "

The consideration of potential new treatments evolve on an daily basis but it's always going to be too late for someone...

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By (user no longer on site)
over a year ago

Charlie's parents are actually getting me rather cross.

It seems that a growing number in society these days have little or no respect for the authority of the court.

The Supreme Court and the European Court of Human Rights have both ruled on this issue.

Ironic really isn't it, if they'd won their case they'd be all over having the court orders followed and complied with and yet, because they lost, they now look set to defy those court orders.

Of course, the interventions of Donald Trump and the Pope have not been helpful - and of course, these figures don't know the specifics of this poor little boy's condition.

I am a parent myself and so I can fully understand and appreciate how traumatic this must be for them, but I am thinking of the one person who is of paramount importance in all of this and that is Charlie.

His parents have been going on about their rights but they have completely ignored that it is Charlie's rights that are the only concern.

Having been through (and still going through) the family court system, I am aware of something that many, many parents are blissfully ignorant of.

Parents do not have rights over their children.

Shocked? Well, there you go.

Our children are individuals. Human beings. They have rights.

No one person has rights over another.

I think that a lot of people confuse parental responsibility with parental rights.

This poor child is suffering.

He is Blind. He is deaf. He is reliant upon a ventilator to live.

His parents can not accept that all they are doing is prolonging his suffering - and this constitutes abuse.

So now they're joining a protest and still want to take him to the states for experimental treatment - despite the courts ruling against it.

Well the court should impose it's authority - though I very much doubt the poor child would survive the journey.

I can't help thinking about Darwin in instances such as this.

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex


"Charlie's parents are actually getting me rather cross.

It seems that a growing number in society these days have little or no respect for the authority of the court.

The Supreme Court and the European Court of Human Rights have both ruled on this issue.

Ironic really isn't it, if they'd won their case they'd be all over having the court orders followed and complied with and yet, because they lost, they now look set to defy those court orders.

Of course, the interventions of Donald Trump and the Pope have not been helpful - and of course, these figures don't know the specifics of this poor little boy's condition.

I am a parent myself and so I can fully understand and appreciate how traumatic this must be for them, but I am thinking of the one person who is of paramount importance in all of this and that is Charlie.

His parents have been going on about their rights but they have completely ignored that it is Charlie's rights that are the only concern.

Having been through (and still going through) the family court system, I am aware of something that many, many parents are blissfully ignorant of.

Parents do not have rights over their children.

Shocked? Well, there you go.

Our children are individuals. Human beings. They have rights.

No one person has rights over another.

I think that a lot of people confuse parental responsibility with parental rights.

This poor child is suffering.

He is Blind. He is deaf. He is reliant upon a ventilator to live.

His parents can not accept that all they are doing is prolonging his suffering - and this constitutes abuse.

So now they're joining a protest and still want to take him to the states for experimental treatment - despite the courts ruling against it.

Well the court should impose it's authority - though I very much doubt the poor child would survive the journey.

I can't help thinking about Darwin in instances such as this."

I have to say that on reflection I agree with much of what you say.

I don't know what I would do in Charlie's parents situation but I hope he doesn't end up being a pawn in a political or religious point scoring exercise.

My biggest hope is that my worst fears are proved wrong and he can be treated and gain improved quality of life.

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By *ptimusDMan
over a year ago

Birmingham

I can't even begin to imagine being in the position that Charlie's parents find themselves. So I'll pass no opinion on whether they're doing the right thing or not with their campaign, because if I find myself in their shoes, I've got no clue what I'll do.

What I know for a fact is that many of the people passing judgement and opinions on this issue don't know the most basic facts of the case.

Charlie has an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). He has severe brain damage and severe epilepsy. He can also not open his eyes, move his arms and legs, and cannot breathe unaided by a ventilator.

Charlie also has a court appointed guardian separate from his parents and the hospital, to look out for his interests. This is the law and isn't unique to Charlie. This is because the child is an individual and not the same person as any of his parents.

This case came to court because Charlie's parents did not accept the professional opinion of Charlie’s doctors, that all things considered, turning Charlie's ventilator off would be the best thing for him as he was suffering and further treatment was futile. The position taken by Charlie's parents is of course understandable because as parents, it is an absolutely tragic news to receive.

It was however revealed in court that the four British doctors at Great Ormond Street responsible for Charlie's care, as well as a fifth instructed by Charlie's parents, sought a second opinion from an expert team from Barcelona, who ended up concurring with the doctors at GOSH.

Furthermore, the doctor offering the "experimental" treatment in the U.S. admitted to the doctors at GOSH, as well as the judges, that it had a vanishingly small chance of working. He also mentioned that the treatment hasn’t even been tested on mice with Charlie’s specific form of mitochondrial disorder, let alone with children. Finally the doctor in the U.S. also admitted that his treatment, even if successful will not reverse Charlie's brain damage.

Charlie’s doctors at Great Ormond Street hospital testified that he was likely to be in pain; that further treatment would not simply be futile, but could cause further suffering; and that they felt it was ethically and professionally wrong to prolong his life artificially. As harsh as this may sound, remember that Charlie is their patient, and the one to whom they must do no harm, not Charlie's parents.

As I said earlier, many of those jumping on the Charlie Gard issue haven't the basic facts of the case. They are rather driven by anti-establishment sentiments and distrust for institutions. These guys thrive on pushing the belief that experts aren’t to be believed, the establishment isn’t to be trusted, and your opinion is as good as some stupid judge or doctor.

The wisdom gained from the masses on social media is now given more value than those of experts and institutions.

I know that our institutions are not infallible, but without a basic willingness to trust, we’re all back in the dark ages; unable to allow anyone else to do anything for us and bound by the limits of our own lack of knowledge. Without a belief that experts, though not infallible, are generally more reliable than people with no idea of what they’re talking about, then medicine can’t function. Neither can science, the rule of law, or government itself.

It is this basic level of trust that allows us to get on a plane with nothing to judge the expertise of the pilot other than that he has been put there by the airline. It allows us to take a paracetamol believing in the manufacturing process that makes the pill. It also allows us to accept that when taking a vaccine, the nurse has actually drawn the right dosage. Most of us will do the above without thinking about it, yet we still somehow have a huge distrust of experts.

Personally, I think it is now time for Great Ormond Street or whoever has the final decision now to hand Charlie to his parents to take to whatever hospital they wish.

This is more to do with the fact that Charlie’s case has now been hijacked by every extreme right wing group in the U.S. to promote their harebrained agendas. White Nationalists, Anti-abortion campaigners, Evangelicals, unpopular politicans, Europhobes, etc, etc

The good name of Great Ormond Street Hospital and the fantastic work they do to provide care and treatment for very sick children, is now also being dragged in the mud. This has consequences that are far reaching and bigger than the Charlie Gard case. GOSH and the children currently being treated there do not need this sort of activity clouding what they do.

Perhaps this is all easy for me to say becaue I'm not Charlie's parents but like I said earlier, I'm not passing a judgement on the actions they're taking. I just have an issue with the motivations of some of the groups that stand with them.

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By (user no longer on site)
over a year ago


"I can't even begin to imagine being in the position that Charlie's parents find themselves. So I'll pass no opinion on whether they're doing the right thing or not with their campaign, because if I find myself in their shoes, I've got no clue what I'll do.

What I know for a fact is that many of the people passing judgement and opinions on this issue don't know the most basic facts of the case.

Charlie has an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). He has severe brain damage and severe epilepsy. He can also not open his eyes, move his arms and legs, and cannot breathe unaided by a ventilator.

Charlie also has a court appointed guardian separate from his parents and the hospital, to look out for his interests. This is the law and isn't unique to Charlie. This is because the child is an individual and not the same person as any of his parents.

This case came to court because Charlie's parents did not accept the professional opinion of Charlie’s doctors, that all things considered, turning Charlie's ventilator off would be the best thing for him as he was suffering and further treatment was futile. The position taken by Charlie's parents is of course understandable because as parents, it is an absolutely tragic news to receive.

It was however revealed in court that the four British doctors at Great Ormond Street responsible for Charlie's care, as well as a fifth instructed by Charlie's parents, sought a second opinion from an expert team from Barcelona, who ended up concurring with the doctors at GOSH.

Furthermore, the doctor offering the "experimental" treatment in the U.S. admitted to the doctors at GOSH, as well as the judges, that it had a vanishingly small chance of working. He also mentioned that the treatment hasn’t even been tested on mice with Charlie’s specific form of mitochondrial disorder, let alone with children. Finally the doctor in the U.S. also admitted that his treatment, even if successful will not reverse Charlie's brain damage.

Charlie’s doctors at Great Ormond Street hospital testified that he was likely to be in pain; that further treatment would not simply be futile, but could cause further suffering; and that they felt it was ethically and professionally wrong to prolong his life artificially. As harsh as this may sound, remember that Charlie is their patient, and the one to whom they must do no harm, not Charlie's parents.

As I said earlier, many of those jumping on the Charlie Gard issue haven't the basic facts of the case. They are rather driven by anti-establishment sentiments and distrust for institutions. These guys thrive on pushing the belief that experts aren’t to be believed, the establishment isn’t to be trusted, and your opinion is as good as some stupid judge or doctor.

The wisdom gained from the masses on social media is now given more value than those of experts and institutions.

I know that our institutions are not infallible, but without a basic willingness to trust, we’re all back in the dark ages; unable to allow anyone else to do anything for us and bound by the limits of our own lack of knowledge. Without a belief that experts, though not infallible, are generally more reliable than people with no idea of what they’re talking about, then medicine can’t function. Neither can science, the rule of law, or government itself.

It is this basic level of trust that allows us to get on a plane with nothing to judge the expertise of the pilot other than that he has been put there by the airline. It allows us to take a paracetamol believing in the manufacturing process that makes the pill. It also allows us to accept that when taking a vaccine, the nurse has actually drawn the right dosage. Most of us will do the above without thinking about it, yet we still somehow have a huge distrust of experts.

Personally, I think it is now time for Great Ormond Street or whoever has the final decision now to hand Charlie to his parents to take to whatever hospital they wish.

This is more to do with the fact that Charlie’s case has now been hijacked by every extreme right wing group in the U.S. to promote their harebrained agendas. White Nationalists, Anti-abortion campaigners, Evangelicals, unpopular politicans, Europhobes, etc, etc

The good name of Great Ormond Street Hospital and the fantastic work they do to provide care and treatment for very sick children, is now also being dragged in the mud. This has consequences that are far reaching and bigger than the Charlie Gard case. GOSH and the children currently being treated there do not need this sort of activity clouding what they do.

Perhaps this is all easy for me to say becaue I'm not Charlie's parents but like I said earlier, I'm not passing a judgement on the actions they're taking. I just have an issue with the motivations of some of the groups that stand with them.

"

Excellent and totally agree

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By (user no longer on site)
over a year ago


"I can't even begin to imagine being in the position that Charlie's parents find themselves. So I'll pass no opinion on whether they're doing the right thing or not with their campaign, because if I find myself in their shoes, I've got no clue what I'll do.

What I know for a fact is that many of the people passing judgement and opinions on this issue don't know the most basic facts of the case.

Charlie has an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). He has severe brain damage and severe epilepsy. He can also not open his eyes, move his arms and legs, and cannot breathe unaided by a ventilator.

Charlie also has a court appointed guardian separate from his parents and the hospital, to look out for his interests. This is the law and isn't unique to Charlie. This is because the child is an individual and not the same person as any of his parents.

This case came to court because Charlie's parents did not accept the professional opinion of Charlie’s doctors, that all things considered, turning Charlie's ventilator off would be the best thing for him as he was suffering and further treatment was futile. The position taken by Charlie's parents is of course understandable because as parents, it is an absolutely tragic news to receive.

It was however revealed in court that the four British doctors at Great Ormond Street responsible for Charlie's care, as well as a fifth instructed by Charlie's parents, sought a second opinion from an expert team from Barcelona, who ended up concurring with the doctors at GOSH.

Furthermore, the doctor offering the "experimental" treatment in the U.S. admitted to the doctors at GOSH, as well as the judges, that it had a vanishingly small chance of working. He also mentioned that the treatment hasn’t even been tested on mice with Charlie’s specific form of mitochondrial disorder, let alone with children. Finally the doctor in the U.S. also admitted that his treatment, even if successful will not reverse Charlie's brain damage.

Charlie’s doctors at Great Ormond Street hospital testified that he was likely to be in pain; that further treatment would not simply be futile, but could cause further suffering; and that they felt it was ethically and professionally wrong to prolong his life artificially. As harsh as this may sound, remember that Charlie is their patient, and the one to whom they must do no harm, not Charlie's parents.

As I said earlier, many of those jumping on the Charlie Gard issue haven't the basic facts of the case. They are rather driven by anti-establishment sentiments and distrust for institutions. These guys thrive on pushing the belief that experts aren’t to be believed, the establishment isn’t to be trusted, and your opinion is as good as some stupid judge or doctor.

The wisdom gained from the masses on social media is now given more value than those of experts and institutions.

I know that our institutions are not infallible, but without a basic willingness to trust, we’re all back in the dark ages; unable to allow anyone else to do anything for us and bound by the limits of our own lack of knowledge. Without a belief that experts, though not infallible, are generally more reliable than people with no idea of what they’re talking about, then medicine can’t function. Neither can science, the rule of law, or government itself.

It is this basic level of trust that allows us to get on a plane with nothing to judge the expertise of the pilot other than that he has been put there by the airline. It allows us to take a paracetamol believing in the manufacturing process that makes the pill. It also allows us to accept that when taking a vaccine, the nurse has actually drawn the right dosage. Most of us will do the above without thinking about it, yet we still somehow have a huge distrust of experts.

Personally, I think it is now time for Great Ormond Street or whoever has the final decision now to hand Charlie to his parents to take to whatever hospital they wish.

This is more to do with the fact that Charlie’s case has now been hijacked by every extreme right wing group in the U.S. to promote their harebrained agendas. White Nationalists, Anti-abortion campaigners, Evangelicals, unpopular politicans, Europhobes, etc, etc

The good name of Great Ormond Street Hospital and the fantastic work they do to provide care and treatment for very sick children, is now also being dragged in the mud. This has consequences that are far reaching and bigger than the Charlie Gard case. GOSH and the children currently being treated there do not need this sort of activity clouding what they do.

Perhaps this is all easy for me to say becaue I'm not Charlie's parents but like I said earlier, I'm not passing a judgement on the actions they're taking. I just have an issue with the motivations of some of the groups that stand with them.

"

Totally with you on this!

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By (user no longer on site)
over a year ago

Heartbreaking for the parents, I can't imagine what they're going through.

Correct me if this isn't correct, I understan there is no cure regardless of which country he travels to or which hospital is caring for him.

Does he have a quality of life, will he ever have one in his lifetime or is he simply being kept alive (pain free I hope) because the parents can't let go?

Like I said terribly sad & I don't believe there's a clear cut right or wrong.

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By *abioMan
over a year ago

Newcastle and Gateshead

the problem that GOSH have that the treatments that are being offered overseas are "experimental".... so if they were to let him go at this stage both the hospital and the NHS in general would be liable....

if they get the parents to sign a waiver to say that neither the hospital nor the NHS are liable at that stage they can then take him out of the country....

but as someone else said... trump has the other ulterior motive where he can turn around to people in the US and say "single payer healthcare" doesn't work and try to push ahead with his own agenda....

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By *icketysplitsWoman
over a year ago

Way over Yonder, that's where I'm bound

OptimusD, I applaud your post.

The other bit of fact that came to light in court today was that GOSH confirmed every other hospital asked to take Charlie Gard has refused.

The parents may be angry with GOSH but, as I said on a thread last week, I don't believe GOSH take the decision lightly. They believe they are acting in the child's best interest.

The parents have been given until Wednesday to present what they claim is new evidence, which really wasn't evident today according to any of the reports I have read.

Just the fact that the lawyers involved feel the judge did not need to recuse himself shows they understand this is not about making the parents feel better but the case being about what is best for the child.

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex


"Heartbreaking for the parents, I can't imagine what they're going through.

Correct me if this isn't correct, I understan there is no cure regardless of which country he travels to or which hospital is caring for him.

Does he have a quality of life, will he ever have one in his lifetime or is he simply being kept alive (pain free I hope) because the parents can't let go?

Like I said terribly sad & I don't believe there's a clear cut right or wrong.

"

His doctors believe he is in pain and he is being given morphine.

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By *ptimusDMan
over a year ago

Birmingham


"Heartbreaking for the parents, I can't imagine what they're going through.

Correct me if this isn't correct, I understan there is no cure regardless of which country he travels to or which hospital is caring for him.

Does he have a quality of life, will he ever have one in his lifetime or is he simply being kept alive (pain free I hope) because the parents can't let go?

Like I said terribly sad & I don't believe there's a clear cut right or wrong.

"

As of today no known treatment will improve Charlie's quality of life.

One of the arguments given by the Great Ormond Street doctors in court was that the best case scenario for the treatment being sort in the U.S., as was also admitted by the doctor that will give the treatment, will be the preservation of a "state of existence".

This basically means that Charlie will be alive & will be able to breathe unaided by a ventilator, and his condition will not deteriorate any further, ..neither will it improve!

However at the moment his condition is that he is severely brain damaged, cannot open his eyes, cannot hear & therefore won't be able to speak, cannot move any of his limbs and is severely epileptic.

Furthermore, and assuming this "state of existence" is achieved, Charlie will need a team of carers, separate from his parents, for most of his waking moments to preserve this state.

I don't know how rich his parents are but that sort of care will not come cheap.

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By (user no longer on site)
over a year ago


"Heartbreaking for the parents, I can't imagine what they're going through.

Correct me if this isn't correct, I understan there is no cure regardless of which country he travels to or which hospital is caring for him.

Does he have a quality of life, will he ever have one in his lifetime or is he simply being kept alive (pain free I hope) because the parents can't let go?

Like I said terribly sad & I don't believe there's a clear cut right or wrong.

As of today no known treatment will improve Charlie's quality of life.

One of the arguments given by the Great Ormond Street doctors in court was that the best case scenario for the treatment being sort in the U.S., as was also admitted by the doctor that will give the treatment, will be the preservation of a "state of existence".

This basically means that Charlie will be alive & will be able to breathe unaided by a ventilator, and his condition will not deteriorate any further, ..neither will it improve!

However at the moment his condition is that he is severely brain damaged, cannot open his eyes, cannot hear & therefore won't be able to speak, cannot move any of his limbs and is severely epileptic.

Furthermore, and assuming this "state of existence" is achieved, Charlie will need a team of carers, separate from his parents, for most of his waking moments to preserve this state.

I don't know how rich his parents are but that sort of care will not come cheap.

"

Going by that summary then,no quality of life whatsoever.

If he was an adult, the decision to switch off the life support would be one that most people would choose based on that medical information, well I know I would.

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By (user no longer on site)
over a year ago

I hate to be blunt and to sound heartless, but...

Going by what I've read, his illness is incompatible with life, and, even if there is a treatment out there that hasn't been discovered, it won't reverse his brain damage, resulting in a poor quality of life.

I'm not a parent, but if I had a child in the same position, I'd hope that I'd be able to focus on my child's needs rather than my desires and let them pass peacefully in dignity rather than drag out the potential pain of my child - as my grieving would heal, but their brain damage and quality of life almost probably will not.

I also keep seeing people complain about GOSH on articles on Facebook, but if they hadn't have treated him for the majority of his short life, he wouldn't even be here now.

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By *eardedSilverFoxMan
over a year ago

Colchester


"It's positive news!

I'm happy for the parents......I'd be the same!

They've raised interesting debates regarding taking a child to hospital......does that ultimately remove parental rights?"

That is exactly what I was thinking last night when watching the news. If hospitals can decide on life or death like that and take it out of the parents hands making it a legal issue then isn't that going to make certain parents perhaps leave it too late before taking the child to hospital?

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By *elma and ShaggyCouple
over a year ago

Bedworth

My opinion is that this poor little boy's parents are being selfish in wanting to keep hold of their son at all costs. This has turned into a battle wills and they have lost sight of the most important person here, their son!

It's time for them to do the right thing, let him slip away and finally grieve for him

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By (user no longer on site)
over a year ago


"My opinion is that this poor little boy's parents are being selfish in wanting to keep hold of their son at all costs. This has turned into a battle wills and they have lost sight of the most important person here, their son!

It's time for them to do the right thing, let him slip away and finally grieve for him"

I hate to say it but I'm starting to think along the same lines.

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By *ady LickWoman
over a year ago

Northampton Somewhere

I'm a mother myself and I can't begin to imagine what they're going through but I think deep, deep down they know that the right thing to do would be to let him go.

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By *loswingersCouple
over a year ago

Gloucester

It's tragic the way the poor child has already had to endure so much suffering , and that this continues as each day goes by .

His brain damage will never be reversed , there is no evidence to suggest the new treatment would be in any way shape or form successful .

So he continues to suffer .....

So sad

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By (user no longer on site)
over a year ago

Having grown up with and looked after my twin sister for the last 9 years of her life- with her being severely brain damaged,epileptic, unable to communicate and double incontinent, I can tell you there is no quality of life other than existence.

I'm grateful that my sister died in her sleep and we didn't have to allow her to die.

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By (user no longer on site) OP   
over a year ago

It is being reported Charlie Gard's parents have withdrawn their application to take their terminally ill son to the US for treatment...

No winners ..... bless them all...

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By *opsy RogersWoman
over a year ago

London

In the meantime GOSH staff have been subjected to threats of violence and death and 'altercations' have taken place in the hospital.

Disgraceful behaviour from ignorant fuckwits.

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By *iscreetmrnickMan
over a year ago

windsor

Now let him go fly with the angels

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By *carineMan
over a year ago

Armthorpe, Doncaster

I`d be happy to switch the machines off on any Pro-Lifers.

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By *izzy RascallMan
over a year ago

Cardiff

God bless them. Time for them to be left alone now. Media need to back off

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By (user no longer on site)
over a year ago

Time for everyone to back off. The supporters outside court are now only dramatising things. The family needs peace of mind to deal with the difficult, heartbreaking times ahead. I hope they find comfort in knowing they did everything they could and more for their son.

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By (user no longer on site)
over a year ago


"In the meantime GOSH staff have been subjected to threats of violence and death and 'altercations' have taken place in the hospital.

Disgraceful behaviour from ignorant fuckwits."

And his parents have released a statement blaming GOSH for their son's deterioration. I feel for them but that's a really shit thing to say about the people that have been keeping him alive for all these months. Especially when it will feed the idiots that are threatening the hospital staff.

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By (user no longer on site)
over a year ago


"In the meantime GOSH staff have been subjected to threats of violence and death and 'altercations' have taken place in the hospital.

Disgraceful behaviour from ignorant fuckwits.

And his parents have released a statement blaming GOSH for their son's deterioration. I feel for them but that's a really shit thing to say about the people that have been keeping him alive for all these months. Especially when it will feed the idiots that are threatening the hospital staff."

His parents are hurting in a way I hope many others never have to. Their world has been torn apart and anything they say should be viewed in that context. The grief they feel will never leave them and if they use unwise words then perhaps we should all try to be a little more understanding of their situation.

FFS Give them a break

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By (user no longer on site)
over a year ago


"I can't even begin to imagine being in the position that Charlie's parents find themselves. So I'll pass no opinion on whether they're doing the right thing or not with their campaign, because if I find myself in their shoes, I've got no clue what I'll do.

What I know for a fact is that many of the people passing judgement and opinions on this issue don't know the most basic facts of the case.

Charlie has an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). He has severe brain damage and severe epilepsy. He can also not open his eyes, move his arms and legs, and cannot breathe unaided by a ventilator.

Charlie also has a court appointed guardian separate from his parents and the hospital, to look out for his interests. This is the law and isn't unique to Charlie. This is because the child is an individual and not the same person as any of his parents.

This case came to court because Charlie's parents did not accept the professional opinion of Charlie’s doctors, that all things considered, turning Charlie's ventilator off would be the best thing for him as he was suffering and further treatment was futile. The position taken by Charlie's parents is of course understandable because as parents, it is an absolutely tragic news to receive.

It was however revealed in court that the four British doctors at Great Ormond Street responsible for Charlie's care, as well as a fifth instructed by Charlie's parents, sought a second opinion from an expert team from Barcelona, who ended up concurring with the doctors at GOSH.

Furthermore, the doctor offering the "experimental" treatment in the U.S. admitted to the doctors at GOSH, as well as the judges, that it had a vanishingly small chance of working. He also mentioned that the treatment hasn’t even been tested on mice with Charlie’s specific form of mitochondrial disorder, let alone with children. Finally the doctor in the U.S. also admitted that his treatment, even if successful will not reverse Charlie's brain damage.

Charlie’s doctors at Great Ormond Street hospital testified that he was likely to be in pain; that further treatment would not simply be futile, but could cause further suffering; and that they felt it was ethically and professionally wrong to prolong his life artificially. As harsh as this may sound, remember that Charlie is their patient, and the one to whom they must do no harm, not Charlie's parents.

As I said earlier, many of those jumping on the Charlie Gard issue haven't the basic facts of the case. They are rather driven by anti-establishment sentiments and distrust for institutions. These guys thrive on pushing the belief that experts aren’t to be believed, the establishment isn’t to be trusted, and your opinion is as good as some stupid judge or doctor.

The wisdom gained from the masses on social media is now given more value than those of experts and institutions.

I know that our institutions are not infallible, but without a basic willingness to trust, we’re all back in the dark ages; unable to allow anyone else to do anything for us and bound by the limits of our own lack of knowledge. Without a belief that experts, though not infallible, are generally more reliable than people with no idea of what they’re talking about, then medicine can’t function. Neither can science, the rule of law, or government itself.

It is this basic level of trust that allows us to get on a plane with nothing to judge the expertise of the pilot other than that he has been put there by the airline. It allows us to take a paracetamol believing in the manufacturing process that makes the pill. It also allows us to accept that when taking a vaccine, the nurse has actually drawn the right dosage. Most of us will do the above without thinking about it, yet we still somehow have a huge distrust of experts.

Personally, I think it is now time for Great Ormond Street or whoever has the final decision now to hand Charlie to his parents to take to whatever hospital they wish.

This is more to do with the fact that Charlie’s case has now been hijacked by every extreme right wing group in the U.S. to promote their harebrained agendas. White Nationalists, Anti-abortion campaigners, Evangelicals, unpopular politicans, Europhobes, etc, etc

The good name of Great Ormond Street Hospital and the fantastic work they do to provide care and treatment for very sick children, is now also being dragged in the mud. This has consequences that are far reaching and bigger than the Charlie Gard case. GOSH and the children currently being treated there do not need this sort of activity clouding what they do.

Perhaps this is all easy for me to say becaue I'm not Charlie's parents but like I said earlier, I'm not passing a judgement on the actions they're taking. I just have an issue with the motivations of some of the groups that stand with them.

"

Great post and you understand what is going on.

I will add something which the news is not aluding too.

This is about risk/ reward to

Here context is needed.

The treatment has not been tested nor has its side effects. But even if this is the case there is no data on whether it will work.

okay so how does this affect decision making in a clinical scenario.

Well if the medication can be given on the ward in the UK you could balance the risk and reward and conclude we have not much to lose.

This is not the case. They want to move Charlie on a plane, with full ICU support which is very risky indeed. The anaesthetist get twitchy moving ICU patients on ventilators to radiology down the corridor. What us the reward, there is little data on it.

so in this context the decision of the 'experts' and the judge is not to move him.

but again a great post previously

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By (user no longer on site)
over a year ago


"In the meantime GOSH staff have been subjected to threats of violence and death and 'altercations' have taken place in the hospital.

Disgraceful behaviour from ignorant fuckwits.

And his parents have released a statement blaming GOSH for their son's deterioration. I feel for them but that's a really shit thing to say about the people that have been keeping him alive for all these months. Especially when it will feed the idiots that are threatening the hospital staff.

His parents are hurting in a way I hope many others never have to. Their world has been torn apart and anything they say should be viewed in that context. The grief they feel will never leave them and if they use unwise words then perhaps we should all try to be a little more understanding of their situation.

FFS Give them a break "

Totally agree

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By (user no longer on site)
over a year ago


"In the meantime GOSH staff have been subjected to threats of violence and death and 'altercations' have taken place in the hospital.

Disgraceful behaviour from ignorant fuckwits.

And his parents have released a statement blaming GOSH for their son's deterioration. I feel for them but that's a really shit thing to say about the people that have been keeping him alive for all these months. Especially when it will feed the idiots that are threatening the hospital staff.

His parents are hurting in a way I hope many others never have to. Their world has been torn apart and anything they say should be viewed in that context. The grief they feel will never leave them and if they use unwise words then perhaps we should all try to be a little more understanding of their situation.

FFS Give them a break "

You misunderstand my post. That's ok.

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By (user no longer on site)
over a year ago


"In the meantime GOSH staff have been subjected to threats of violence and death and 'altercations' have taken place in the hospital.

Disgraceful behaviour from ignorant fuckwits.

And his parents have released a statement blaming GOSH for their son's deterioration. I feel for them but that's a really shit thing to say about the people that have been keeping him alive for all these months. Especially when it will feed the idiots that are threatening the hospital staff.

His parents are hurting in a way I hope many others never have to. Their world has been torn apart and anything they say should be viewed in that context. The grief they feel will never leave them and if they use unwise words then perhaps we should all try to be a little more understanding of their situation.

FFS Give them a break "

This is such a heartbreaking case and few of us can imagine what Charlie's parents are going through. But at least they know that they tried everything possible to help their son

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By (user no longer on site)
over a year ago


"In the meantime GOSH staff have been subjected to threats of violence and death and 'altercations' have taken place in the hospital.

Disgraceful behaviour from ignorant fuckwits.

And his parents have released a statement blaming GOSH for their son's deterioration. I feel for them but that's a really shit thing to say about the people that have been keeping him alive for all these months. Especially when it will feed the idiots that are threatening the hospital staff.

His parents are hurting in a way I hope many others never have to. Their world has been torn apart and anything they say should be viewed in that context. The grief they feel will never leave them and if they use unwise words then perhaps we should all try to be a little more understanding of their situation.

FFS Give them a break

You misunderstand my post. That's ok."

Actually I agree with you about the fkwits who think it's acceptable to attack both the hospital and staff in wherever way.

But the parents and their grief will make them say things that may be better put or even unsaid.

I was just suggesting that a little more understanding and empathy for their situation rather than critical comment on the parents reactions may have been appropriate.

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By (user no longer on site)
over a year ago


"In the meantime GOSH staff have been subjected to threats of violence and death and 'altercations' have taken place in the hospital.

Disgraceful behaviour from ignorant fuckwits.

And his parents have released a statement blaming GOSH for their son's deterioration. I feel for them but that's a really shit thing to say about the people that have been keeping him alive for all these months. Especially when it will feed the idiots that are threatening the hospital staff.

His parents are hurting in a way I hope many others never have to. Their world has been torn apart and anything they say should be viewed in that context. The grief they feel will never leave them and if they use unwise words then perhaps we should all try to be a little more understanding of their situation.

FFS Give them a break

You misunderstand my post. That's ok.

Actually I agree with you about the fkwits who think it's acceptable to attack both the hospital and staff in wherever way.

But the parents and their grief will make them say things that may be better put or even unsaid.

I was just suggesting that a little more understanding and empathy for their situation rather than critical comment on the parents reactions may have been appropriate.

"

I do feel for them though, I said that. But not clearly enough so I apologise for seeming to be heartless. I just mean it's a shame they said that in their statement as the fuckwits will jump on it and attack the hospital. They said something similar about the hospital the other day when GOSH released a statement asking people not to attack their staff.

I think the parents are being incredibly restrained, although behind closed doors maybe they are screaming. I hope they can find peace but it won't be soon.

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By *uby0000Woman
over a year ago

hertfordshire

let little rest in peace now

i feel so sorry for the parents too

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By (user no longer on site)
over a year ago


"In the meantime GOSH staff have been subjected to threats of violence and death and 'altercations' have taken place in the hospital.

Disgraceful behaviour from ignorant fuckwits.

And his parents have released a statement blaming GOSH for their son's deterioration. I feel for them but that's a really shit thing to say about the people that have been keeping him alive for all these months. Especially when it will feed the idiots that are threatening the hospital staff."

See this is where my empathy for them wains, they appear to have blamed the hospital from the beginning & fuelled the media circus too...something I'd imagine they may well come to regret at some point...

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By (user no longer on site)
over a year ago

You have to feel for all those involved here. So many very hard decisions to be made by lots of people.

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex

Who knows how we would react if it was our child.

The things being reported now make for painful reading.

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By (user no longer on site)
over a year ago

It's heartbreaking. The US doc said it was too late to even try any treatment for Charlie, but others have said it'd never have been effective.

I know if I was the parent I'd fight like hell, whether the 'facts' fit or not.

Tragic.

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By *ouple in LancashireCouple
over a year ago

in Lancashire

Terrible situation for them all, i sincerely hope that Great Ormond St allow them to take him home to spend their last hours together..

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By *mmabluTV/TS
over a year ago

upton wirral


"As a parent i couldnt imagine being in their shoes. There comes a time when you have to say goodbye.

Also are trump and the vatican going to support all the terminally ill children we have in this country"

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By *uby0000Woman
over a year ago

hertfordshire

in s short life his parents showed him so much love but as they now accept its too late to help him now may they all find peace

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By *ordon88Man
over a year ago

town

Put yourself in the parents shoes firstly. Not being able to watch your child grow marry and have his own family.

Now Charlie's shoes.

Growing watching all his friends play find love have kids.

Now think to yourself is this the life you would choose on both parts

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex


"Put yourself in the parents shoes firstly. Not being able to watch your child grow marry and have his own family.

Now Charlie's shoes.

Growing watching all his friends play find love have kids.

Now think to yourself is this the life you would choose on both parts"

I can't put myself in his parent's shoes, their position is unimaginable.

Charlie would never have been in those shoes himself.

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By *ordon88Man
over a year ago

town


"Put yourself in the parents shoes firstly. Not being able to watch your child grow marry and have his own family.

Now Charlie's shoes.

Growing watching all his friends play find love have kids.

Now think to yourself is this the life you would choose on both parts

I can't put myself in his parent's shoes, their position is unimaginable.

Charlie would never have been in those shoes himself."

I totally agree. I didn't want to put that though. It's terrible that they can't make the decision themselves and it's down to a judge. Who probably has super healthy kids. To make the decision

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By *icecouple561Couple
Forum Mod
over a year ago

East Sussex


"Put yourself in the parents shoes firstly. Not being able to watch your child grow marry and have his own family.

Now Charlie's shoes.

Growing watching all his friends play find love have kids.

Now think to yourself is this the life you would choose on both parts

I can't put myself in his parent's shoes, their position is unimaginable.

Charlie would never have been in those shoes himself.

I totally agree. I didn't want to put that though. It's terrible that they can't make the decision themselves and it's down to a judge. Who probably has super healthy kids. To make the decision "

I wasn't there I only know what I've read in the press. However if what I've read is true Charlie had maive seizures around Christmas time and scans showed him to be brain dead. Some doctors from abroad said they could treat him despite never having seen him, the scans or having used the treatment on any child with the same condition. From this his parents took hope that he could some day be a normal child and wanted to take him to America.

My opinion is that their grief and understandable desire to see their son become a "normal" little boy was exploited.

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By *ordon88Man
over a year ago

town


"Put yourself in the parents shoes firstly. Not being able to watch your child grow marry and have his own family.

Now Charlie's shoes.

Growing watching all his friends play find love have kids.

Now think to yourself is this the life you would choose on both parts

I can't put myself in his parent's shoes, their position is unimaginable.

Charlie would never have been in those shoes himself.

I totally agree. I didn't want to put that though. It's terrible that they can't make the decision themselves and it's down to a judge. Who probably has super healthy kids. To make the decision

I wasn't there I only know what I've read in the press. However if what I've read is true Charlie had maive seizures around Christmas time and scans showed him to be brain dead. Some doctors from abroad said they could treat him despite never having seen him, the scans or having used the treatment on any child with the same condition. From this his parents took hope that he could some day be a normal child and wanted to take him to America.

My opinion is that their grief and understandable desire to see their son become a "normal" little boy was exploited."

Yes the doctors just wanted to use him as an experiment it seems. So they fed the parents a load of bs to persuade them there could be a chance . Disgusting

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