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.
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.
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.
Their lawyer said that delays meant “it was no longer in Charlie’s interests” to keep him on a ventilator.
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.
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”.
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.
“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.”
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.”
Outside court, supporters calling themselves Charlie’s Army reacted with anger and tears, chanting: “Shame on you judge” and, “shame on Gosh.”
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.
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.”
He said the parents had made “the most painful of decisions, that only parents can make.”
Armstrong said: “Charlie has waited patiently for treatment. Due to delay, that window of opportunity has been lost.”
The couple felt that continuing their fight would cause Charlie pain, he said. The case was “worthy of a Greek tragedy”.
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.”
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.
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.
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.
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.”
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.
SOURCE: Haroon Siddique
The Guardian
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