Baby Charlie's 'devastated' parents sob in court and scream out 'no' as judge rules doctors CAN turn off their son's life support 'to let him die with dignity'

Charlie Gard's parents are 'devastated' after a judge today ruled their son should die against their own wishes - but they have already vowed to fight on to save his life.
Heartbroken Connie Yates and Chris Gard both sobbed and yelled 'no' as Mr Justice Francis sided with Great Ormond Street doctors who believe his life support should be switched off.
The judge said he had made the decision with the 'heaviest of hearts' but with 'complete conviction' that letting Charlie die was in his best interests.
Afterwards his parents said they could not understand why the judge had not 'at least given Charlie the chance of treatment' or 'why the door has been closed to him'.
It is not clear when Charlie's treatment will be withdrawn but Miss Yates and Mr Gard will apply to the Court of Appeal to stop it, their lawyer has said.
More than 80,000 people raised £1.26million for Charlie's treatment - his mother has said she would set up a charity in his name to save other children if his life was not spared.


http://www.dailymail.co.uk/news/article-4400432/Charlie-Gard-s-today-live-die.html

How very sad, and what a terrible position to be in.

On the one hand you have all those experts stating the child should die, and another wild card in America which the parents see as the only chance their baby might have.

What a nightmare.

Poor people - of course they want to try everything before they finally give up.

Absolutely heartbreaking.

A desperately sick child is to be kept on life support for three weeks after his parents signalled they may appeal against a court’s decision to allow doctors to withdraw treatment and let him die.

Mr Justice Francis said it was in the best interests of eight-month-old Charlie Gard for his life support machine to be switched off.

He said Charlie, who suffers from an extremely rare and debilitating genetic condition, should be allowed to “die with dignity” after experts agreed the profound brain damage he suffers could not be improved.

But his parents have condemned the judge for refusing to give their son one last “chance of treatment”.

Chris and Connie Gard now have three weeks in which to lodge an appeal against the ruling. Only if they decide not to appeal - or if any appeal is subsequently dismissed - can Great Ormond Street Hospital begin the process of withdrawing treatment.

Mr Justice Francis’s ruling came despite Charlie’s parents raising £1.2 million to pay for him to be flown to a US clinic for pioneering treatment.

The ruling - which means Charlie will not be allowed to travel to the Unites States - prompted distressing scenes in the High Court on Tuesday, with members of his family bursting into tears.

On hearing the judge's conclusion Charlie’s father Chris Gard cried out: “No, no!” and buried his head in his hands as relatives in the public gallery leant forward to comfort him.


http://www.telegraph.co.uk/news/2017/04/11/high-court-rules-doctors-can-withdraw-life-support-treatment/


I hate to see this happen and it heart-wrenching to even read this happen

Merged with earlier thread.

eddie wrote:Merged with earlier thread.

My apologies, did not see there was another thread.

Thorin wrote:

eddie wrote:Merged with earlier thread.

My apologies, did not see there was another thread.

Absolutely no problem didge. Done it myself a few times.

What a dilemma for the parents. They know their baby is dying yet they must try to save him. They are the only ones their baby has fighting for him. So sad, yet any parent would do the same. They have to try everything, their baby deserves that much. I hope they succeed.

magica wrote:What a dilemma for the parents. They know their baby is dying yet they must try to save him. They are the only ones their baby has fighting for him. So sad, yet any parent would do the same. They have to try everything, their baby deserves that much. I hope they succeed.

Yes - if they don't try everything, they'll always wonder if the baby could have been saved. Logic doesn't really come into it.

That's right Fen, all the time he's alive there's a chance. They must be given that chance.

Raggamuffin wrote:

magica wrote:What a dilemma for the parents. They know their baby is dying yet they must try to save him. They are the only ones their baby has fighting for him. So sad, yet any parent would do the same. They have to try everything, their baby deserves that much. I hope they succeed.

Yes - if they don't try everything, they'll always wonder if the baby could have been saved. Logic doesn't really come into it.

I think they need to give the parents that chance. Otherwise, they will probably spend the rest of their lives agonising over how they never had that long shot chance, which no matter how small, is perfectly understandable. Also, doctors have been proved wrong in certain cases where they've been about to switch off the life support.

https://www.theguardian.com/lifeandstyle/2015/jun/02/doctors-predict-patient-die-prognosis-wrong

magica wrote:That's right Fen, all the time he's alive there's a chance. They must be given that chance.

this is where it gets contentious
the Child would already be dead if it wasn't for modern medicine.
If he was born 30 years ago, he would have already passed.

Modern medicine can basically keep the husk 'alive' for decades, from the sounds of it the child is near brain dead already. So any life would be highly dependent on machines to keep the body functioning and Medicine cannot do anything to fix his severely damaged brain.

Sometimes the parents Just need to accept nature. they have been given more time with him than they would have if it wasn't for the doctors that are telling them there is no hope.

Also I would back the call of UK doctors that have kept him alive this long, over 'some small hope' offered by US ones (due to the profiteering nature of medical industry in the USA)

I don't think anyone could watch the gallery of photos without being moved to tears.
It's obvious that baby has been deeply loved since before he was even born.
I believe if the parents thought he was in any pain they would think differently, but he isn't, so they hope for a miracle, and what parent would not want the same if it was their baby?

I think the US doctor is being a geranium, giving false hope so he can get paid. this is really a case of the superior ethics of UK doctors over US ones

He even says the is almost no chance that giving him the Million dollars for the treatment will work, but He is happy to treat him.

The reality

"Subjecting him to nucleoside therapy is unknown territory, for it has never even been tested even on mouse models, but it may (or may not) subject the patient to pain, possibly even to mutations.

The Unfortunate delusion of hope

Mrs Gard said before Tuesday's hearing: "We'd like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.

Respect to the Judge for making the hard but necessary decision, that is trying to protect these parents from predatory Medical practices and their own despair.

You know what hope is
Hope is a bastard
Hope is a liar, a cheat and a tease
Hope comes near you, kick its backside
Got no place in days like these

But if hope is all you have....

Common sense and logic are no match for the longing to keep your child alive, any parent would do anything no matter how tenuous.

The doctors who have treated the baby here, and the judge who has studied the case are right....and any doctor who gives false hope is wrong,  prolonging the agony for all involved when realistically ther is no hope is beyond cruel.

I agree it is not the parents Fault.

And That song is actually pretty accurate to the situation being from the perspective of Parents with a terminally ill child.

Sometimes you just have to accept that death is part of life, and that enough is enough. If this were my child, I'd be so torn, it's a real Sophie's Choice...which is no choice at all. I might try to get my head around the fact that all that money would most likely do more good given to charity so other kids can benefit. That any pain my poor blind brain damaged baby might suffer was outweighed by letting him pass. When someone is beyond hope, it's the really mighty love that says it's ok to go.

any parent would clasp at straws. If they don't fight for their baby, who will.

Give them the chance, at least that way if baby dies they can say they tried everything. Such pain for them, it's hard to let go when he's still breathing albeit not on his own. Such pain, bless them.

veya_victaous wrote:I think the US doctor is being a geranium, giving false hope so he can get paid. this is really a case of the superior ethics of UK doctors over US ones

He even says the is almost no chance that giving him the Million dollars for the treatment will work, but He is happy to treat him.

The reality

"Subjecting him to nucleoside therapy is unknown territory, for it has never even been tested even on mouse models, but it may (or may not) subject the patient to pain, possibly even to mutations.

The Unfortunate delusion of hope

Mrs Gard said before Tuesday's hearing: "We'd like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.

Respect to the Judge for making the hard but necessary decision, that is trying to protect these parents from predatory Medical practices and their own despair.

You know what hope is
Hope is a bastard
Hope is a liar, a cheat and a tease
Hope comes near you, kick its backside
Got no place in days like these

I'm not absolutely clued up on what this 'alternative' treatment involves but from the above it does sound horrendous. I think there's a real dilemma here, because some of the most pioneering treatments were originally declared insanity to consider. Below are a few, so you can't blame those parents for clutching at straws.

Hungarian physician, Ignaz Semmelweis, suggestions that puerperal fever was contagious and that handwashing might save the lives of thousands was initially rejected.

Peyton Rous's demonstration of the viral transmission of cancer in 1911, was rejected by critics. Rous was so dismayed that he quit working with the retrovirus that now bears his name—the Rous sarcoma virus. We now know that 20 percent of cancers have an infectious etiology.

Dr Barry Marshall, a gastroenterologist from Western Australia, described his efforts in the mid-1980s to convince the medical establishment that ulcers were caused by bacteria and not by stress, spicy foods, and too much acid, as conventional medical wisdom held at the time.

When neurologist Stanley Prusiner insisted that mad cow disease and Creutzfeldt-Jakob disease are caused not by viruses, bacteria, or fungi but by infectious proteins, which he dubbed "prions" in 1982, even he admitted that the idea was "clearly heretical." Prusiner himself described this first publication as setting off a "firestorm," and he suffered a series of "very vicious" personal attacks in the press.

Immunotherapy is now being heralded as a revolution in cancer treatment, but when immunologist James Allison first suggested his research interest in T cells, his mentors discouraged him. "Tumor immunology had such a bad reputation," he told the New Yorker in 2012. "Many people thought that the immune system didn't play any role in cancer."After wandering "in the wilderness for a while," Allison finally developed an antibody that he felt was ready for pharmaceutical development. But biotech companies repeatedly turned him away. Drugs based on Allison's initial ideas are now poised to become among the most clinically and commercially successful cancer drugs on the market; he has also won a number of awards for his work, including last year's Lasker Award, often considered a shortlist for the Nobel Prize.

The use of antifolates, by Dr Sidney Farber, drugs that block rather than encourage the growth of white blood cells was initially rejected as quackery. Aminopterin, a drug synthesised by chemists at Lederle Laboratories, caused near-miraculous remissions of leukaemia in some patients. Unfortunately there was only a partial success. But Farber’s brave trial, ridiculed by colleagues, was the first step in treating childhood leukaemia, whose ultimate success remains perhaps the greatest triumph ever achieved by chemotherapy. That came from a combination of drugs administered together, which is now typical of the chemotherapeutic regimens for most cancers. The treatments were tough, the doubters many. “It took plain old courage to be a chemotherapist in the 1960s and certainly the courage of the conviction that cancer would eventually succumb to drugs,” says Vincent DeVita, who was instrumental in developing a combination of drugs that raised the survival rate for Hodgkin’s disease from zero to over 70 per cent. It took huge resilience from the patients, too.

https://www.raconteur.net/healthcare/history-of-cancer-treatment

This is baby Charlie Gard clutching a St Jude medallion - the patron saint of hopeless causes and desperate situations. About the saddest thing I've seen.

He is such a beautiful baby. Mentally he is very poorly, physically though he has grown and looks normal.
Maybe if he was wasting away and looked ill it would be an easier thing for the parents to accept.

Its just utterly heart breaking, I hope they all will eventually find peace.

If the money has been raised via thousands of people then those parents should be able to scoop that child up in their arms and say

"Piss off everyone, it's our child and we are going to America to try one last time"

End of discussion.

eddie wrote:If the money has been raised via thousands of people then those parents should be able to scoop that child up in their arms and say

"Piss off everyone, it's our child and we are going to America to try one last time"

End of discussion.

That would mean disconnecting him from life support, which means he dies.

That is probably a major part of the issue is he will not survive a flight to the USA without being connected to the machines that are keeping his 'shell' functioning.
Naturally his body has stopped breathing, it is only still functioning due to technology.

I know he could die. They can't fly him over in life support?

eddie wrote:I know he could die. They can't fly him over in life support?

The hospital has probably refused. But I guess they could hire private doctors who'd do it.

HoratioTarr wrote:

eddie wrote:I know he could die. They can't fly him over in life support?

The hospital has probably refused.     But I guess they could hire private doctors who'd do it.

Well that's exactly what I meant. They have enough money raised and some nurses etc do this kind of thing for little cost when it's kids. My mums neighbours did exactly the same thing when their 4 year old daughter was sent home to die. They raised money and took her to America and she is now 16 years old and fine.
(Some may remember her from a forum as I advertised her plight and lots of forum posters donated very kindly.)

The nurses flew with them for free. No charge.

I think its wrong for judges to make this kind of decision especially when there is money to take a sick child abroad for treatment .

Moother Connie Yates has given an emotional interview vowing to fight on to save the life of her terminally-ill eight-month-old son Charlie, who suffers from the disease mitochondrial depletion syndrome. Speaking in a heartbreaking interview with the Daily Mail, mum Connie Yates said she and husband Chris Gard are simply doing what any loving parent would do in these circumstances. The parents launched an appeal two months ago to raise £1.3m for a treatment trial in a US hospital. Connie said: “If we thought there was absolutely no hope we would not have fought for this. But if there is even the slimmest chance of a treatment working, and the doctor in the US told us he believes there is, what loving parent would not take that chance? We have only ever wanted to improve Charlie’s quality of life.”

The heartbroken mum continued: "We are absolutely convinced he is not in pain. When he feels our presence, he tries to open his eyes as much as he can, so we do not believe he is blind. Because we know our son, we do not believe Charlie has the structural brain damage doctors say he has. We know as parents, he does have a sleep/wake cycle. We can wake him up by tickling his feet. We can soothe him to sleep by stroking his head.” Connie went on to explain: "This isn’t about us being selfish, keeping him alive because we can’t bear to let him go. It is because if we did not fight for this chance, we will have to live with the ‘what if’ for ever. It’s that ‘what if’ which for us would be so unbearable." Connie also thanked the public for their support and said the couple are still hoping to travel to America with Charlie for treatment if their appeal is successful – this may take up to three weeks.


http://www.hellomagazine.com/healthandbeauty/mother-and-baby/2017041538160/charlie-gard-mother-connie-yates-interview/


It pains me so much to see this happen to those so young. Where the odds of them surviving. Are so overwhelmingly stacked against them. To then do what any loving parent would do. Fight to keep them alive.

The judge is so wrong in this situation. I understand the reasons based medically. That all point to there being no hope for this child to survive. But to judge there is no hope for this child and deny an attempt to try. Cuts into and brushes aide one of the greatest aspects e have that make us human.

That we have hope, even when everything seems impossible..

Now my baby sister was born with an extremely rare disorder. Where by she was only given no more than 1 or 2 months to live. That she would never smile or laugh and feel such positive emotions. Specialist doctors have to speak frankly giving a worse case scenario.

She lived up to a year and proved the doctors all wrong, by constantly smiling and later laughing. Doctors have to make those closet understand the worse case probabilities here. Which due to confirmation bias. Of there vast knowledge and understanding of such conditions. Will as it did back with my sister and as they have done with this case. Is then to forgo any hope at all.

It sends out all the wrong messages there is around who we are as humans. That we never lose hope when all seems lost. No matter how remote and impossible something seems to be.

There is always hope and to judge there is none, when they have the money raised by funding for further treatment. To travel to the US. Is being done in order to save the parents further hurt, when they see little hope

Its denying them exhausting all treatments for their child. .

Doctors may vastly be right on many issues, but they are not always right. Here there is money for the treatment.

Even if the judge has given up all hope, of survival for their child. The meetings and money are in place to allow for further treatment.

Where the parents will see every day that she lives longer as a blessing here.

Telling parents to give up all hope on their babies, when they can try something else. Is the wrong thing to do.

Knowing you could so something, no matter how remote. To have this denied, will only end up causing far more harm mentally to the parents. Where if they had been allowed to try and it then failed. They at least had tried everything. Being denied the right for this treatment. Will forever haunt them and feel they have failed their child, by not being able to try everything for them.

That is the extra price paid to this family by the judge, by denying treatment.

agree didge . It's added to their pain and they will feel like they failed him . So wrong of the judge .

Vicar of Dibley (vod) wrote:I think its wrong for judges to make this kind of decision especially when there is money to take a sick child abroad for treatment .

Ironic really as our society thinks nothing of allowing people to die in agony with no dignity all the time day in and day out. Where are the mercy courts then? We let our elderly die in hospital corridors and without adequate pain relief all the time.

Vicar of Dibley (vod) wrote:agree didge . It's added to their pain and they will feel like they failed him . So wrong of the judge .

Lets hope they do appeal and win here Dibs

The judge is not taking everything into consideration, as I have stated.