Parents want to keep child on life support.
Apparently money is not an issue as the parents raised over $1,000,000 for care but it begs the question: “if they had allowed continued care who’d have paid for it after the money ran out given that precedent is administering care was set?”
In this case I am with the judge. The child has no hope. Why prolong the misery?
Specialists at Great Ormond Street hospital (GOSH) in central London had told the court they believed it was time to stop providing life support for eight-month-old Charlie Gard, who has a rare genetic condition.
Doctors treating the infant say he has brain damage and should be moved on to a palliative care regime. His parents, Chris Gard and Connie Yates, of Bedfont, west London, wanted to take him to a hospital in the US for a treatment trial.
On Tuesday, Mr Justice Francis said: “It is with the heaviest of hearts but with complete conviction for Charlie’s best interests that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”
As he spoke, Gard buried his head in his hands and cried “no” as other family members broke down. Charlie’s parents are considering mounting an appeal.
The judge praised Charlie’s parents “for their brave and dignified campaign on his behalf” and “their absolute dedication to their wonderful boy from the day that he was born”.
He stressed that funding was not an issue in the case. He said of the US therapy: “I dare say that medical science may benefit objectively from the experiment, but experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him.”
The judge added: “Charlie’s parents have sadly but bravely acknowledged and accepted that the quality of life that Charlie has at present is not worth sustaining, for he can only breathe through a ventilator, and although they believe that he has a sleep/wake cycle and can recognise them and react to them when they are close, they realise that he cannot go on as he is lying in bed, unable to move, fed through a tube, breathing through a machine.”
He said the form of mitochondrial mutation Charlie had was extremely rare. At the outset of the hearing it seemed there was a “lone voice” in the US offering what some described as “pioneering treatment”.
Francis added: “Understandably, Charlie’s parents had grasped that possibility, they have done all they could possibly have done, they have very publicly raised funds. What parents would not do the same? But I have to say, having heard the evidence, that this case has never been about affordability, but about whether there is anything to be done for Charlie.”
The judge said the therapy in the US was “unknown territory” and there was unanimity from experts he had heard from that structural brain damage could not be reversed. “But if Charlie’s damaged brain function cannot be improved, as all agree, then how can he be any better off than he is now, which is a condition that his parents believe should not be sustained?”
Charlie’s parents were devastated by the court decision and struggled to understand why the judge had not “at least given Charlie the chance of treatment”, their solicitor, Laura Hobey-Hamsher, said.
Hobey-Hamsher said the couple – who had raised more than £1.2m through a GoFundMe appeal for Charlie – wanted to consider what they need to do next. She said: “This court has had to face one of the most fundamental issues for any court. It has not been easy. Lessons do, however, need to be learned about how medical professionals face decisions such as this.
“Connie and Chris want me to make clear how profoundly grateful they are for all of the help and generosity they have received throughout this time … Their immediate priority is returning to, and spending time with, Charlie.”
The child’s treatment would not immediately be withdrawn while his parents consider the possibility of appealing the ruling. The judge said it was “remarkable” that, given the parents’ circumstances, they had not been granted legal aid for the court proceedings.
In his full ruling, Francis said that no one with Charlie’s mutation had ever been treated with the nucleoside therapy proposed, adding that a US expert had said there was no direct evidence it could improve the child’s condition, just a theoretical scientific basis it could help. The US doctor later acknowledged, after seeing documents about the severity of the condition, that it was “very unlikely” that Charlie would improve with that therapy.
Referring to the £1.2m raised, the judge stressed it was imperative he made clear that this case was not about money and said one medical professional had told the court that in the US they would try anything provided there was the funding.
After hearing his ruling, Pravin Fernando, a barrister, told the judge the couple wanted to appeal against the decision. Hobey-Hamsher said outside court that the couple would have three weeks to start a challenge.
Francis had finished hearing evidence in the family division case on Friday. The judge had heard that Charlie, who was born on 4 August, has mitochondrial depletion syndrome, a condition that causes progressive muscle weakness and brain damage. It is thought to affect just 16 children worldwide.