Charlie Gard's Parents Concede He Cannot Be Saved

26.07.2017

The parent’s of Charlie Gard have abandoned their legal action seeking permission to have the 11-month-old transferred to the United States for an experimental treatment. They accept that it is too late to reverse the muscle damage Charlie has suffered as a result of an extremely rare genetic disorder.

After a five-month court battle, Chris Gard and Connie Yates said 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, will shortly be removed from life support at Great Ormond Street hospital 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 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. 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 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 Great Ormond Street 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 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”.

In the statement read in court, Yates and Gard paid tribute to the “second-to-none” care for Charlie at Great Ormond Street 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.

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. 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.

“As the weeks have passed, the unstoppable effects of Charlie’s aggressive, progressive, depletive disorder have become plainer to see,” a statement from the hospital said.

Charlie’s parents are now seeking to be allowed to bring their son home to die. A lawyer for Great Ormond Street Hospital said the hospital was willing to fulfil the parental wishes if it was “practical, possible and safe, and in Charlie’s interests so that he comes to no harm”.

Victoria Butler-Cole, the lawyer instructed by Charlie’s guardian, said the options with respect to him dying at home were withdrawing ventilation within “a matter of hours” or after “a period of days”. But she said the latter option was unrealistic because it would require “replicating intensive care outside an intensive care unit”, including a team of three doctors.

Great Ormond Street said it was unable to provide such a team or source one from anywhere in the country. The court heard it was difficult to get medical professionals to provide such care at home because of the risk of complications and the fact that they would not be covered by insurance.

Describing it as “the most difficult, painful process for the parents”, Mr Justice Francis urged the parties to resolve their differences outside the courtroom.

The Guardian. July 26. The Guardian. July 24.