The parents of 8-month-old Charlie Gard have been left utterly devastated as a High Court judge ruled that doctors could withdraw life support for their critically ill little boy, the BBC reports.
Tiny Charlie has a rare disease called mitochondrial depletion syndrome, which affects the genetic building blocks that give energy to cells. The condition causes progressive muscle weakness and brain damage, ultimately proving fatal.
Charlie’s west London-based parents, Connie Yates and Chris Gard, had been hoping to extend Charlie’s life long enough to get him to the US for a new treatment trial. A crowd-funding campaign established by the desperate mum and dad, in their bid for this last-ditch treatment, has raised over £1.25m from more than 80,000 donors.
But specialists at Great Ormond Street Hospital where Charlie’s being treated, think this treatment push is inadvisable and misguided. They say the little boy has irreversible brain damage and should instead be moved to palliative care.
Poor quality of life
Debra Powell QC, who is representing the Great Ormond Street Hospital, said Charlie’s medical team felt his “quality of life” was “so poor” his life support should be discontinued.
Parents Connie and Chris had their treatment hopes devastatingly dashed in court this week when Mr Justice Francis – who has visited Charlie in hospital – handed down his decision on Charlie’s future, after hearing five days of expert evidence.
“I know this is the darkest day for Charlie’s parents… my heart goes out to them,” Mr Justice Francis said as he ruled that life support should be switched off.
“I only hope in time they will come to accept it is in Charlie’s best interests to let him slip away peacefully, and not put him through more pain and suffering.”
The BBC reports that Chris shouted ‘No!” and he and Connie both broke down in tears and buried their heads in their hands. They left the court before Justice Francis had finished reading his judgement.
A barrister appointed to represent Charlie’s interests, Victoria Butler-Cole, said the proposed US treatment is “purely experimental” and that continuing life support would only “prolong the process of dying” for the little boy.
But Connie and Chris’s barrister, Sophia Roper, said Charlie would not suffer significant harm if he was flown to the US for further treatment and he should be given a chance to improve.
Connie and Chris now have three weeks to appeal this heartbreaking decision.
The hospital will continue Charlie’s life-support until the appeal is heard.