The 11-month-old has twice survived plans to end his life support in the past two weeks. Photo / Family of Charlie Gard via AP
The 11-month-old has twice survived plans to end his life support in the past two weeks. Photo / Family of Charlie Gard via AP
The parents of Charlie Gard have been given two days to submit new evidence that illustrates how experimental drug treatment could improve the health of the critically-ill baby.
During an emotional hearing at the High Court, Charlie's parents and lawyers acting on behalf of Great Ormond Street Hospital clashed over whether there was any new evidence to submit over the 11-month-old's condition.
Doctors claim Charlie's body has grown but his head has not, a fact which is disputed by Charlie's parents Chris Gard and Connie Yates, who have been given 48 hours to provide circumference measurements proving otherwise.
The judge admitted the "head growth" was an issue, after GOSH lawyer Katie Gollop said it had not grown in three months and that there was "no prospect of Charlie becoming a normal boy."
But an angry Yates told the judge: "They measured it this morning and it has gone up by 2cm in a week. His head has grown I promise you." Gard added: "They are fudging it."
The youngster's heartbroken father also yelled out that Great Ormond Street was "lying" to the judge and stormed out of the High Court after doctors said keeping him alive "is against his welfare".
Gard and Yates both interrupted as Mr Justice Francis was asked to decide if their son should live or die for the second time in three months.
The judge will now hear their case on Thursday but said: "You are going to have to persuade me that something new or dramatic has changed."
Charlie's legal team say seven experts from the US and Europe now believe their son is not irreversibly brain damaged and claim new evidence proves he could benefit from experimental drug treatment.
But Katie Gollop QC for Great Ormond Street said: "Some of this new evidence that was said to be new is not new", adding some of it dates back to 2003.
Gard shouted to her "when are you going to start telling the truth?" and said to the judge: "They are lying to you". He would later leave the room and slammed the door and Yates also said: "It's not the truth."
Outside court Charlie's army of supporters chanted his name, waved banners and held prayers led by a controversial US pastor in the UK for the hearing.
The judge said he may not make a "final determination" on Thursday. But he said he wanted Charlie's parents to spell out any new evidence and explain their case.
He said he wanted to know what had changed and said he would make decisions on the basis of "clear evidence".
"I will hear new evidence," said the judge. "I am not going to rake over facts." He said he would analyse the case "calmly and fairly".
Yates told the judge: "He is our son. Please listen to us." After today's hearing, a spokesman for the family said that "if Charlie is still fighting then they are still fighting".
He added: "Baby Charlie and Charlie's parents are thankful for the outcome of the hearing in the high court today.
"Charlie's parents look forward to new evidence being heard before the high court this Thursday that will result in Charlie's parents taking him either to the US or Italy for ground-breaking treatment.
"Mum and dad say that if Charlie is still fighting then they are still fighting. Lastly but not least Charlie's parents wish to thank the continued support of millions of supporters of baby Charlie from around the world."
The parents of Charlie Gard have been given two days to submit new evidence that illustrates how experimental drug treatment could improve the health of the critically-ill baby. Photo / AP
Outside court Charlie's army of supporters chanted his name, waved banners and held prayers led by a controversial US pastor as the hearing went on this afternoon.
Francis, who ruled earlier this year that Charlie should be allowed to die, opened the hearing by telling their lawyers: "You are going to have to persuade me that something new or dramatic has changed".
Charlie's lawyers then said that the judge should be replaced as they demanded a new two-day hearing to decide their son's fate later this month.
He ruled out a two-day hearing and said he was "troubled" by this and read aloud a statement from a member of staff at GOSH saying the doctors were under "extreme strain" while the case dragged on.
Francis said: "Staff feel it is desperately unfairness to Charlie" to keep treating him "week after week knowing that every step they take for Charlie is against his welfare."
In response to calls for him to step down the judge responded: "I did my job and will continue to do so", adding: "There is not a person alive who would not want to save Charlie".
Francis set out that he had already heard "very clear evidence" that structural brain damage cannot be reversed and that Charlie's body is growing but his head is not.
His mother was seen shaking her head and saying "no, no" in response before Grant Armstrong, for Charlie's family, suggested Francis was the wrong man to hear the case.
Armstrong told the court that new evidence put forward by seven experts from across Europe say a drug from the US could lead to "dramatic clinical improvements" for Charlie.
He added that if there was "a chance for Charlie" and it was a chance that was "worth taking".
But lawyers for Great Ormond Street Hospital said they were struggling to identify new evidence or new research.
Gollop said: "Some of this new evidence that was said to be new is not new", adding references in the seven scientists' letter referred to research in 2003, 2007, 2012 and 2014.
A guardian independently representing Charlie said the same to which Gard interrupted proceedings again and said: "We're his voice".
His parents want their son to have two to three months grace to be given experimental nucleoside treatment that has had good results with children with similar forms of mitochondrial disease.
Francis had ruled in April that ending life-support treatment would be in Charlie's best interests after a High Court trial.
Specialists at Great Ormond Street Hospital in London, where Charlie is being cared for, have said therapy proposed by a doctor in America is experimental and would not help. Doctors say life-support treatment should stop.
Charlie's parents asked European court judges in Strasbourg, France, to consider their claims after losing battles in the High Court, Court of Appeal and Supreme Court in London. But Strasbourg judges have refused to intervene.
Before the hearing the parents made another plea to save their son.
Today Yates said: "I don't know what we'd be like if we lost him. We have been very close to losing him on two occasions. I just hope we get another miracle and he gets that chance to live".
She added: "If he was suffering, I couldn't do it, I promise".
If they lose Charlie's life support will be shut off - if they win Charlie could be flown to America or Rome for experimental treatment now backed by seven experts opposed to Great Ormond Street's plans to end his life.
Charlie Gard with mum and dad Connie and Chris in Great Ormond Street hospital in London. Photo / Family of Charlie Gard via AP
"I think parents know when their children are ready to go and they've given up and Charlie is still fighting".
She added: "We are living on a a knife edge but we are staying strong. We have hope to carry on", adding the support from Pope Francis and US President Donald Trump had "saved his life so far".
Great Ormond Street requested the hearing after seven top doctors suggested the new therapy might work and Francis, who previously ruled "with the heaviest of hearts" that life support must be withdrawn, will hear the latest arguments.
Charlie's parents believe experimental medication from the US has a 10 per cent of working and they still believe he has the chance to be a "normal boy" even though his London doctors claim he is irreversibly brain damaged.
Yates told The Sun: "We don't want him to be in the ground, we want him to be riding a bike. There's 18 children currently on this medication, they're all getting stronger, they're all getting better. It's a miracle what happens".
She told BBC News today: "I wouldn't be able to sit there and watch my son suffer and be in pain. He still gets enjoyment. We could take him to the park. He wakes up, he enjoys his tickles, he watches videos on the iPad".
She added: "I hope they can see there is more of a chance than previously thought and hope they trust us as parents and trust the other doctors".
Yates said that the case of Ashya King highlights where doctors can get it wrong.
She said: "His parents took their son out of the country and were arrested. They ended up getting their son the treatment, and it worked. He is now at school and that treatment is now coming to the NHS. Sometimes parents are right".
The interest of the Pope and Trump in Charlie's case has "saved his life so far", his mother has said.
Yates told BBC Radio 4's Today programme: "Yeah, they have saved his life so far.
"It turned it into an international issue. There are a lot of people that are outraged by what is going on. We have got new evidence now so I hope the judge changes his mind."
She said that "sometimes parents are right in what they think" and it is not simply that they do not want to switch off life support.
She said the family now have seven specialist doctors - two from the US, two from Italy, one from England and two from Spain - who are supporting them.
She added: "We expect that structural damage is irreversible but I have yet to see something which tells me my son has irreversible structural brain damage."
In a moving press conference yesterday his parents made a last plea for their baby to be given experimental treatment.
They were boosted by a 350,000-signature petition asking Great Ormond Street to stop insisting it would be kinder for Charlie to be allowed to die.
In another twist, the couple were joined by a controversial pastor who flew in from Washington to pray for them.
Rev Patrick Mahoney declared God has already played a part by making Trump and Pope Francis speak out for the sick 11-month-old.
Charlie's parents yesterday accused Great Ormond Street and the courts of blocking their hope of taking him to America for therapy for his mitochondrial depletion syndrome.
Gard, 32, said the hospital was "fantastic" but added: "Unfortunately, they are not specialists in Charlie's condition - the specialists are in America, where we want to go."
He said there was no evidence of his son having catastrophic brain damage, despite doctors' claims. "His brain is affected but this medicine can get into the brain and help that," he said.
"He should have had this chance a long time ago. He deserves his chance at last. Let's get Charlie the treatment he needs."
Yates, 31, said the new evidence from seven scientists - whose letter last week persuaded Great Ormond Street to reopen the court case - meant Charlie now had a 10 per cent chance.
Connie Yates and Chris Gard want their son to have two to three months grace to be given experimental nucleoside treatment. Photo / AP
The seven specialists include the American doctor offering to treat Charlie, and a colleague, neither of whom can be named for legal reasons.
The seven specialists include the American doctor offering to treat Charlie, and a colleague, neither of whom can be named for legal reasons. Two others are from the papal children's hospital in Rome, two are from the Vall d'Hebron research institute in Barcelona, and the seventh is an award-winning clinical geneticist at Cambridge University.
"We feel that that's a chance worth taking," she said. "We've been fighting for his medication since November. Parents know their children best. He's our son, he's our flesh and blood.
"We feel that it should be our right as parents to decide to give him a chance at life, for a medication that's just oral medicine, with no known major side effects."
Charlie's condition, which saps energy from his organs and muscles, means he cannot breathe without an artificial ventilator.
Great Ormond Street doctors say he is irreversibly brain damaged, deaf, blind, and quite possibly in pain.
They have told the High Court it was "not a tolerable situation to leave a child in". Francis agreed, and was backed by the Appeal Court, Supreme Court and European Court of Human Rights, which all ruled it would be kinder to let Charlie die.
His death has been "scheduled" twice already, but both times the hospital postponed the removal of his breathing tube.
Yates said: "We wouldn't be able to sit there and watch him in pain, and suffering. We're not like that, we're not evil.
"We're not doing this for us. I absolutely believe this medication will work. I'm not a doctor but I feel like I am an expert in his condition now."
Two American congressmen have announced they will table legislation in Washington to give Charlie and his family resident status to help them travel for treatment.
Yesterday the couple were supported in person by Rev Mahoney - a radical pastor repeatedly arrested for protesting against abortion in the United States.
He set up a $5,000 fundraising page online to travel to London and "save Charlie's life".
At the press conference outside Great Ormond Street, he gripped Gard's arm and prayed for "their precious, beautiful son who has captured the imagination of the world".
He said: "I cannot say how impressed I am by their heroism, and the fact that these two people have stood against the courts, bureaucrats, governments and hospital administration to fight for the life of their son. There is no greater power than the love of parents."
The 63-year-old pastor, who posted on Facebook a photo of himself smiling with Charlie's parents, credited his own appeals to God for the involvement of Trump and Pope Francis.
"Great Ormond Street said nothing yesterday but has previously insisted its doctors had explored every medical treatment for Charlie and concluded the proposed therapy 'would be futile and would prolong Charlie's suffering".
It added: "This is not an issue about money or resources, but absolutely about what is right for Charlie."
Yesterday the stance was backed by Neena Modi, president of the Royal College of Paediatrics and Child Health.
She said that doctors were bound by the law, which puts the interests of a child above its parents.
The professor added: "When situations are hopeless or unbearable or life is limited, the focus of care rightly shifts to ensuring death is pain-free, dignified, and in the presence of loved ones."
The High Court is expected to rule in the case later this week.
