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Charlie Gard: parents end legal battle as time runs out for critically ill baby Charlie Gard: parents end legal battle as time runs out for critically ill baby
(about 3 hours later)
Charlie Gard’s parents have ended their legal fight over treatment for the critically ill baby, saying that it is “too late” for it to work. Charlie Gard’s parents have ended their legal fight for their critically ill baby to be flown to the US for experimental treatment, saying it was too late for the process to work.
Chris Gard and Connie Yates announced their decision as a high court judge was preparing to oversee the latest round of a five-month legal battle. After a five-month court battle, they said at an emotional hearing on Monday that they were abandoning their fight for Charlie to receive the nucleoside bypass therapy (NBT) they hoped would bring about significant recovery. Their decision means that Charlie, who was born on 4 August last year with a rare genetic condition inherited from his parents, will shortly be removed from life support at Great Ormond Street hospital (Gosh) and will not live to see his first birthday.
In a move that brings an end to a protracted, emotional legal case in which Great Ormond Street hospital (Gosh) argued Charlie’s life support should be switched off to prevent him suffering further, the parents said on Monday that they want to withdraw their application for him to receive experimental treatment in the US. After Grant Armstrong, acting for Charlie’s parents, shocked the packed courtroom in central London by saying that owing to to “extensive muscle atrophy” they believed he no longer had any prospect of enjoying a “meaningful life”, the baby’s mother, Connie Yates, read a statement.
Their lawyer said that delays meant “it was no longer in Charlie’s interests” to keep him on a ventilator. As she tearfully paid tribute to the couple’s son from the witness stand and insisted that they had only done what any parent would do, friends, family, lawyers and members of the press also wept.
At an emotional hearing, in which lawyers as well as relatives were in tears, Charlie’s mother was invited to give a statement before the court. The hospital later made an unprecedented attack on US neurology professor Michio Hirano, who had led Charlie’s parents to believe he could be treated. In a statement it said Gosh had shared their hopes when Hirano said he had new evidence that Charlie might benefit from NBT.
Standing at the front of the room, choking back tears, with Chris Gard beside her, she told the packed courtroom that the couple had only ever wanted what was best for their “sweet, gorgeous and incredible boy”. But it added that they had learned with “surprise and disappointment” last week that he had neither looked at the child’s brain scans nor read the medical notes, other expert opinions or the judgement of the court. It added that Hirano “retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie”.
She said the care by Gosh had been second-to-none but that it was now too late to give Charlie the treatment that she and her husband believe would have benefited him. In court, Yates spoke of the couple’s efforts to save their son. Supported by her husband, Charlie’s father Chris Gard, she said: “Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you but we weren’t allowed to. Sweet dreams baby. Sleep tight our beautiful little boy.”
“Charlie is Charlie and we wouldn’t change him for the world. All our efforts are for him, we only want to give him a chance at life,” she said. “There’s one simple reason for Charlie’s muscular deterioration [and] that was time.” Armstrong, who was also in tears as he again addressed the court after Yates had spoken, said at the conclusion of the hearing: “It doesn’t get rawer than that.”
She went on: “We knew in July [the treatment could work] and our poor boy has been left there to lie in hospital without treatment while court battles are fought.” Yates and Gard hugged and kissed court staff, supporters and relatives as they left the courtroom.
Outside court, supporters calling themselves Charlie’s Army reacted with anger and tears, chanting: “Shame on you judge” and, “shame on Gosh.” Emotions were also high outside the Royal Courts of Justice, central London, when the news filtered out. There was anger and tears among protesters who have kept up a noisy vigil with people chanting “shame on you, judge” and “shame on Gosh”. Members of US pro-life groups who flew over to side with Charlie’s parents could be seen holding hands and praying.
Mr Justice Francis had been scheduled to analyse what the couple said was fresh evidence at a hearing in the family division of the high court in London. In the statement read in court, Yates and Gard paid tribute to the “second-to-none” care for Charlie at Gosh but nevertheless made clear their frustrations at the delays they believe scuppered their son’s chances of survival.
Grant Armstrong, representing Charlie’s parents, told the high court in London: “For Charlie, it’s too late, time has run out, irreversible muscular damage has been done and the treatment can no longer be a success.” Yates said: “There is one simple reason for Charlie’s muscles deteriorating to the extent they are in now – time. A whole lot of wasted time ... our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought.”
He said the parents had made “the most painful of decisions, that only parents can make.” She also maintained that Charlie, who is blind and deaf, had not suffered irreversible brain damage as the hospital has said and insisted that it was only the muscular atrophy that rendered the NBT therapy no longer worth pursuing.
Armstrong said: “Charlie has waited patiently for treatment. Due to delay, that window of opportunity has been lost.” Monday’s hearing had been expected to be a chance for Yates and Gard to present what they claimed was new evidence that showed the prospects of successful treatment for Charlie were higher than previously thought.
The couple felt that continuing their fight would cause Charlie pain, he said. The case was “worthy of a Greek tragedy”. But the court heard that after new EEG and MRI scans were carried out that it was hoped would boost their case, a multidisciplinary meeting was held and experts concluded that Charlie had suffered significant muscular deterioration.
Armstrong said Charlie’s parents hoped to set up a foundation and they wanted lessons to be learned from the case. “Dark days lie ahead for these parents,” he said. “The parents wish to treasure their remaining time with Charlie, however short that may be.” Among those at the meeting was Hirano, who had spoken in favour of Charlie having the NBT which he said had a minimum 10% chance of bringing about significant improvement in his condition. His evidence was expected to form the crux of Monday’s hearing before Yates and Gard decided to drop the legal proceedings.
Charlie’s parents took the decision to end their legal fight on Friday but kept it to themselves so that they could spend time in private with their son over the weekend, away from the glare of the media, the court heard. According to the hospital statement, signed by its legal counsel, Katie Gollop, QC, its doctors had consulted with Hirano about possible NBT for Charlie last year and were seeking ethics approval to send him to the US. But he suffered seizures before Christmas that resulted in irreversible brain damage. Charlie’s parents disagreed with the hospital’s assessment and believed he could have been treated in the months that followed, but “there remains no agreement” on that.
The decision was taken after a multidisciplinary meeting, following further MRI and EEG scans. Charlie was also examined by Dr Michia Hirano, a US professor of neurology, who had said the nucleoside bypass therapy had a minimum 10% chance of bringing about significant improvement in Charlie’s condition. “As the weeks have passed, the unstoppable effects of Charlie’s aggressive, progressive, depletive disorder have become plainer to see,” the Gosh statement said.
However, after flying over from the US to examine him in person for the first time, after being asked to do so by the judge, and assessing the scans he concluded that the NBT therapy was no longer a viable option. But when Hirano, backed by other doctors in Italy, said there was new evidence that NBT would work on the child, Gosh hoped that he was right. The professor took up the invitation that had been open since last December to come to the UK for the new court hearing. In its statement the hospital said it hoped that he and others whose medical opinions “had so sustained Charlie’s parents” would “find much upon which to reflect”.
Katie Gollop QC, for Gosh, said: “The hearts of each person working at Great Ormond Street hospital and the hearts of the hospital go out to Charlie and his mother and his father ... We have more sorrow than I have words to say.” Yates and Gard said in court that Italian and US doctors were still willing to give Charlie NBT but they had concluded it was not in their son’s interests. They made the decision to end their legal fight on Friday night but kept it to themselves so that they could spend time in private with their son over the weekend, away from the glare of the media, their counsel said.
Accepting the withdrawal of their application and an end to the “tragic case”, Francis praised Gard and Yates for “the love and care they have given at all times to their wonderful boy Charlie”.
He also criticised people who he said had ignorantly waded into the case on social media.
“A lot of things have been said by those who know almost nothing about this case but feel entitled to express opinions,” said Francis. He added that it was a “disgrace” that Great Ormond Street medics had been subjected to abuse and threats.
Charlie, who was born on 4 August last year, inherited a rare genetic condition from his parents.
He is blind, deaf and can only breathe through a ventilator as a result of the mitochondrial disease. Gosh physicians say that he is also brain damaged but Charlie’s parents claim the doctors are wrong.
In April, Francis sided with Gosh. The decision was upheld by the UK’s appellate courts and the European court of human rights but came back before Francis after Charlie’s parents claimed to have new medical evidence that the treatment has a higher chance of succeeding than previously thought. Gosh’s lawyer disputed the existence of new evidence.