Fight over for Charlie Gard
Legal battle ends as parents agree to stop life support for their son
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.
After a five-month court battle, Chris Gard and Connie Yates said at an emotional hearing on Monday that they were abandoning their fight for their son 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 inherited genetic condition, was expected to be removed soon from life support at Great Ormond Street hospital (Gosh) and will not live to see his first birthday.
After Grant Armstrong, acting for Charlie’s parents, shocked the packed courtroom in central London by saying that owing to “extensive muscle atrophy” they believed he no longer had any prospect of enjoying a “meaningful life”, the baby’s mother read a statement.
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.
The hospital later attacked 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.
But it added that they had learned with “surprise and disappointment” last week that he had not looked at the child’s brain scans, and not read the medical notes, other expert opinions or the judgment of the court. It added that Hirano “retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie”.
In court, Yates spoke of the couple’s efforts to save their son. Armstrong, who was also in tears as he addressed the court, said at the hearing’s conclusion: “It doesn’t get rawer than that.”
Emotions were also high outside the Royal Courts of Justice in 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 prolife groups who flew over to side with Charlie’s parents could be seen holding hands and praying.
In the statement read in court, the parents paid tribute to the “second-tonone” care for Charlie at Gosh but nevertheless made clear their frustrations at the delays they believe scuppered their son’s chances of survival.
Yates 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.
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.
According to the hospital statement, 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.
Emotions high … Charlie’s parents, Chris Gard and Connie Yates