WHY CHARLIE GARD’S SHORT LIFE ALWAYS WILL BE REMEMBERED
The terminally ill British boy, who died on Friday, became the subject of a legal battle with a renowned children’s hospital
Charlie Gard, the terminally ill British baby at the centre of an emotionally charged court battle, has died.
The11-month-old died in a hospice on Friday, a week before his birthday.
His death followed a global appeal that gripped and divided a nation, and caught the attention of the White House and the Vatican.
News of his death was confirmed by his parents: “Our beautiful little boy has gone. We are so proud of you, Charlie.”
US president Donald Trump and Pope Francis had offered to intervene to help Charlie receive treatment his parents hoped would extend his life.
The White House and Vatican passed on their condolences.
“I entrust little Charlie to the Father and pray for his parents and all those who loved him,” Pope Francis tweeted.
US vice-president Mike Pence posted: “Saddened to hear of the passing of Charlie Gard. Karen and I offer our prayers and condolences to his loving parents during this difficult time.”
The exhaustive efforts by Connie Yates and Chris Gard to prolong their son’s life ended when his breathing apparatus was withdrawn.
Charlie had a rare genetic disease that left him brain damaged and unable to breathe unaided.
He was being cared for at Great Ormond Street Hospital in London, but doctors said all possible treatments had been tried and that anything other than palliative care would cause the baby more pain.
The world-renowned children’s hospital had gone to court to request that he be taken off life support, saying it was prolonging his suffering.
But Charlie’s parents believed there were still unexplored options for him.
They had hoped to take their son to the US, where he would be given nucleoside therapy.
But on Monday his parents were forced to abandon their legal bid after learning it was too late for him to receive the experimental treatment.
Grant Armstrong, the lawyer representing Ms Yates and Mr Gard, told high court judge Nicholas Francis that “time had run out” for Charlie.
Speaking outside the courthouse, Mr Gard described his son as a warrior and said he did not believe he would make his first birthday.
Ms Yates told the court they had fought to give their baby a chance at life.
“A whole lot of time has been wasted. We are sorry we could not save you.” Mr Gard and Ms Yates made the decision after US neurologist Dr Michio Hirano said he was no longer willing to offer their son experimental treatment, after examining Charlie’s latest brain scans.
Judge Francis had scheduled a two-day hearing to consider new evidence from Dr Hirano, who travelled to London from Columbia Medical Centre in New York to examine Charlie.
But Mr Armstrong said that because of delay the “window of opportunity” to treat the child had been lost.
Charlie’s parents were then unable to agree with the hospital on a care plan for their son.
Having first petitioned to take their child home for his final days, the parents then asked for him to receive life support in a hospice.
Senior staff at the hospital said that was “not in any way viable” and advised that Charlie’s treatment should end after arriving at the hospice.
On Thursday, Judge Francis agreed to move Charlie to a hospice where his life support would be withdrawn, adding that it was inevitable his death would follow.
The hospital expressed its doctors’ deep regret that this “uniquely painful” case had been played out in the courts and said they wished there could have been “a less tragic outcome”.
“Charlie’s parents have tirelessly advocated for what they sincerely believed was right for their son and nobody could fault them for doing so,” the hospital said.
It insisted it had done everything in its power to accommodate the wishes of Charlie’s parents but there was no way the baby, “a patient with such severe and complex needs”, could have safely spent any significant time outside of intensive care.
“The risk of an unplanned and chaotic end to Charlie’s life is an unthinkable outcome for all concerned and would rob his parents of precious last moments with him,” it said.
“Great Ormond Street Hospital would like to reassure everyone who has followed this heartbreaking story that we always put the best interests of every single one of our patients above all else.”
Charlie’s case has prompted global debate over who has the moral right to decide the fate of a sick child.
He was born on August 4 last year. At first, he appeared to be healthy, but eight weeks after his birth his mother noticed he was losing weight and strength.
Soon after, the couple were told that their son had been born with a rare genetic illness.
There is no cure for mitochondrial DNA depletion syndrome.
By November, specialists had told Charlie’s parents that his organs would fail and estimated he had days left to live.
His parents began to research alternative treatments and read about the work of Dr Hirano.
Doctors at the hospital also began to explore the option, but in January Charlie suffered a series of seizures that left him with irreversible brain damage.
Doctors determined there was no hope for him.
Charlie’s parents went public with their plight on the eve of a first preliminary hearing at the high court in March.
They took their case to the court of appeal, the supreme court and the European court of human rights, only to have their hopes dashed at every hearing.
More than £1.3million (Dh6.3m) had been raised to pay for Charlie’s care.
The money will now be used to set up the Charlie Gard Foundation, which will help children in a similar position.
Charlie’s parents have advocated for what they believed was right for their son and nobody could fault them