HOPE FOR CHARLIE?
Charlie Gard’s parents give the thumbs up in court as US doctor claims treatment may offer ‘significant’ improvement – and judge invites him to UK to examine ill tot
A SPECIALIST doctor has claimed treatment could offer "significant" improvement to Charlie Gard at a High Court hearing today after his parents stormed out following a furious clash with the judge.
The case was adjourned until 2pm tomorrow after a short break this evening, which saw with Charlie's mum Connie Yates leaving the court sobbing as she was comforted by friends and family.
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According to Sky, the judge called for a multi-disciplinary meeting to take place in "a matter of days" to allow all parties to get a better understanding of each other's views.
Tomorrow's proceedings will assess progress on arranging that meeting - which will involve a group of professionals from one or more clinical disciplines who together make decisions regarding Charlie's treatment.
Today, a specialist said he believed the experimental therapy could boost the tot's brain function, and revealed the treatment had up to a 50 per cent success rate on patients with a similar condition.
He plans to fly to London to examine Charlie, and says treatment is the only way to know if the tot's brain damage is reversible.
But he said he disagreed that the chance of improving Charlie's condition was "vanishingly small".
Both sides clashed in heated debates about issues including Charlie's brain function, pain levels and whether his skull is growing.
Speaking over video-link this afternoon, the specialist said he believed there was "at least a 10 per cent" chance that Charlie's muscle strength could improve and the therapy was "worth trying".
He also hinted that Charlie may not be permanently brain damaged - as argued by doctors at Great Ormond Street Hospital.
Charlie's parents Connie and Chris gave a thumbs-up as the expert claimed scans only showed "disorganisation of brain activity and not major structural brain damage".
But the doctor admitted he couldn't assess the amount of permanent brain damage Charlie had suffered - and agreed that a specialist child neurologist should make a final evaluation.
During cross-examination from Great Ormond Street's barrister Kate Gollop QC, he confirmed he had only seen summaries of Charlie's medical records, and had not read the judge's decision in the earlier case.
Key developments in today's High Court hearing:
- Charlie's parents storm out of the hearing after judge quotes them as saying Charlie had no quality of life
- The judge said Charlie's welfare 'paramount' but he is open to changing his mind about the ruling
- US specialist says he believes treatment could give 'small but significant' boost to Charlie's brain function
- Doctor claims scans do not prove brain damage is permanent and treatment is only way to find out
- Reveals experimental nucleoside therapy has helped patients with similar condition but never been tried for Charlie's
- Expert agrees to fly to London to examine Charlie in person
- Judge says GOSH staff have been abused and threatened and slams those responsible
- Heated debate over issues including extent of Charlie's brain damage and whether his skull is growing
- The judge called for a multi-disciplinary meeting to allow all parties to better understand each other's views
- The case has been adjourned until 2pm tomorrow
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Asked how much he would expect Charlie's brain function to improve if successfully treated, he said it would be "small but significant".
It comes after Chris and Connie stormed out - leaving the tot's favourite monkey toy behind - after disagreeing with the judge over comments he said they made in the original hearing three months ago, reports .
Mr Justice Francis quoted the pair as saying Charlie had not got quality of life, sparking their furious response.
His mum Connie shouted "he's not suffering" as they walked out, having a cigarette to calm their nerves.
After lunch the pair returned to court and the judge apologised, promising not to misquote them.
They presented "new evidence" to the High Court today, desperately hoping to get approval to take Charlie to the US for experimental treatment.
Earlier the judge told the court he was unlikely to reach a decision today, agreeing to hear from a specialist in New York offering to treat Charlie.
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The anonymous expert said new data published since the last hearing in April showed nucleoside therapy reduced muscle weakness in mice with TK2-related depletion, a similar condition to Charlie's.
Unlike Charlie, that condition doesn't affect the brain.
The expert also said the experimental treatment had up to a '56 per cent chance of success' on patients with the TK2 condition. He said five out of nine patients treated had reduced their daily time on a ventilator by at least eight hours, with one weaned off a ventilator completely.
But he stressed Charlie has a different strain of the condition - known as RRM2B.
Asked if Charlie would be the first “experiment” of the treatment for his condition, the expert said yes.
The witness said Charlie needs an extra nucleoside – not previously been used in treatments – which had additional risks, but he would still go ahead.
He added that ideally they would carry out mice studies for Charlie’s condition, but that could take up to two years to complete.
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The expert said he would visit Charlie if the judge suspended the case for a few days, saying he had felt uncomfortable asking to see Charlie at the "excellent and well-regarded" Great Ormond Street Hospital.
The hearing is the latest legal hurdle for Charlie's parents in their agonising eight-month battle to keep him alive.
Barrister for the family Grant Armstrong described the specialist - who requested to remain anonymous - as a "scientist at forefront of his field" and "not a lone voice".
The judge began the hearing by telling the court "Charlie's welfare is the paramount concern although we may approach it in different ways".
He said: "If there is important evidence which suggests that I should change my decision then I will change it."
The judge also made an apparent dig at interventions from the Pope and Donald Trump, saying: "I am not going to pay much attention to comments from people who don't know much about the case."
He also criticised members of the public who have sent abuse and threats to staff at Great Ormond Street, describing it as "grossly unfair".
Presenting the family's case, Mr Armstrong challenged previous findings that Charlie has irreparable brain damage, and said there had been errors in the way scans had been perceived.
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Mr Armstrong also presented a letter from a doctor who claims the damage is not irreversible.
The barrister told court that new information, which wasn't available when the previous ruling was made in April, meant that treatment was in Charlie's best interests.
But Great Ormond Street's barrister Kate Gollop QC told court the evidence was "not new" and was very familiar.
In a written statement, she said Charlie's parents felt "stripped of their rights", but the hospital was bound by "different principles".
Charlie's parents also dispute the hospital's claims that his head isn't growing - which doctors say proves his brain isn't developing.
Medics claim his skull hasn't grown in three months, but the family said their measurements were 2cm different from the hospital's.
The judge ordered Great Ormond Street to provide evidence by tomorrow and said it was "absurd that the science of this case is being infected by the inability to measure a child's skull".
He told Mr Armstrong: "If I am being told that records from a world famous hospital are wrong I need more than you just telling me."
Excerpts from Great Ormond Street Hospital's statement to the court
"[Charlie] is on a low dose of oral morphine.
“Before that was started quite recently, all of those caring for him at GOSH hoped very much that Charlie did not experience pain.
"They did so in the knowledge that if he did not it was because he had no experience at all because he was beyond experience.
“A world where only parents speak and decide for children — and where children have no separate identity or rights and no court to hear and protect them — is far from the world in which GOSH treats its child patients.
"We have treated over 1000 patients with mitochondrial disease and nucleoside treatment where appropriate.
"[Charlie] has no quality of life and no real prospect of any quality of life.
"What has been very difficult … is the effect on Charlie of the delay." He has had to "endure months on a ventilator".
“He has grown bigger but growth has not been accompanied by health. The reverse is true and there are signs of deterioration.
“GOSH will act in accordance with Charlie’s best interests and its duty of care to him.
“It will continue to provide him with the highest quality of care … and to honour Charlie’s rights as his own, unique human being.”
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Mr Armstrong also claimed diarrhoea seems to be the only side effect of the therapy Charlie's parents want him to have.
BBC journalist and former QC Joshua Rozenberg said on Twitter Chris and Connie looked "anxious and apprehensive" as they sat in the centre of the packed courtroom.
Chris had the little boy's cuddly monkey in his pocket as he and Connie arrived at the courthouse in London for the hearing this morning.
Before the hearing, family spokesman Alasdair Seton-Marsden broke down as he read out a statement from Connie and Chris outside court.
It said: "We're continuing to spend every moment working around the clock to save our dear baby Charlie.
"We have been requesting this specialised treatment since November.
"We've not asked the hospital for anything... except for the permission to go.
"We hope the judge and the courts will finally rule in our favour.
"We love him more than life itself, if he is still fighting, we are still fighting."
He said the pair now have gathered more than 800,000 signatures across seven petitions demanding Charlie be allowed to leave, and they aim to reach 1million by midnight.
Outside court protesters known as Charlie's Army chanted support as they stood behind barriers festooned with blue balloons.
Taxi, bus and lorry drivers responded to their request to "please beep for Charlie".
The demonstrators carried placards saying: "Give Charlie a Chance" and "GOSH tell the truth".
Yesterday Mr Seton-Marsden told US show Fox & Friends he was "effectively being held as a captive" by the state, as judges and doctors refused to let him leave the UK for treatment.
Mr Seton-Marsden said he believed Charlie's parents would have been allowed to take him abroad if the 11-month-old had been treated privately.
He told the show: "Had they been wealthy parents, and gone to a private hospital, and said thank you very much, you’ve tried to treat Charlie as best you can, your nursing is great, but actually you don’t specialise in this very rare condition, now we would like to go and try this other hospital elsewhere, this wouldn’t raise an issue.
"His parents, who could not be more perfect parents and are his legal guardians, can’t even take him home.
"They have been told they can’t even take him home to die and they cannot fly him to America.
"They have had an air ambulance standing by for weeks. In the end, it was even offered for free.
"So literally, he is being held captive by effectively the British state and the British national health system."
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Charlie's parents, from Bedfont, shared a rallying cry on the Charlie's Fight Twitter account this morning.
It said: "Pray with EVERYTHING you've got today! Spread #charliegard support EVERYWHERE! If he's still fighting we're STILL fighting! LIFE!!!!"
Charlie was a healthy baby when he was born last August, but at three months' old he was diagnosed with mitochondrial DNA depletion syndrome, an incredibly rare genetic condition which saps energy from his muscles and organs.
Little Charlie was put on a ventilator and doctors at Great Ormond Street Hospital believed he should be allowed to "die with dignity".
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His parents researched the condition and learnt about nucleoside bypass therapy - an experimental treatment.
They begged doctors to consider Charlie for the therapy, and the hospital applied for ethical permission to attempt it.
But by the time the decision was made, doctors said a bout of devastating epileptic seizures had left the tot with irreversible brain damage - making the treatment "futile".
His parents do not accept that Charlie is as severely brain damaged as doctors claim, which is why they believe the therapy should be given a chance.
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A doctor in the US then agreed to treat Charlie, and the couple raised £1.3million to take him there for treatment.
But in April, the High Court sided with Great Ormond Street and ruled that instead of being treated abroad, Charlie should be taken off a ventilator and given palliative care.
Connie, 31, and Chris, 33, appealed the ruling, but it was upheld by the Court of Appeal, the Supreme Court and the European Court of Human Rights. The battle seemed over.
The heartbroken couple said their final goodbyes to their little boy, and family travelled from all over Britain to be at his bedside.
But Charlie's fight was catapulted to the top of the global news agenda after comments by first the Pope, and then US President Donald Trump, on Twitter.
Hospitals in the US and Italy offered to treat him, and both countries even suggested giving him citizenship to try and get round the legal ruling.
With hours to go until his life-support was due to be switched off, an eleventh-hour reprieve saw doctors apply for a new High Court hearing - giving his parents another chance to convince judges to let him undergo experimental therapy.
The hospital announced it had been contacted by two international hospitals with fresh evidence about potential treatment for Charlie.
The family say they have seven specialist doctors - including one from England - supporting their calls for Charlie to be given the treatment.
A preliminary hearing was held on Monday with Mr Justice Francis, who in April sided with doctors.
He told the couple that he had already analysed the case at a trial and would not rake over old facts.
But he said he would consider any new evidence and scheduled another hearing in the Family Division of the High Court for today.
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