Baby Charlie Gard dies after British legal battle
The 11-month-old’s parents had sought treatment in the U.S. for his rare ailment.
LONDON — After months of legal battles and bedside vigils, Charlie Gard died Friday with his parents by his side.
The 11-month-old British boy, whose plight captured the world’s attention, was transferred to a hospice overnight Thursday and removed from his ventilator Friday afternoon, the child’s godfather, James Evers, said.
On Friday evening, the infant’s mother issued a statement saying: “Our beautiful little boy has gone, we are so proud of you Charlie.”
Charlie, who suffered from a rare genetic condition, was the subject of an emotional and protracted legal battle that ended this week when his parents — Chris Gard and Connie Yates — abandoned their bid to have him sent to the U.S. for experimental treatment.
They said time had run out for Charlie because his condition had deteriorated too much for treatment to be effective.
But that was not the end of their battle with the British courts and the London hospital that was treating their son.
They said their last wish was to bring their boy home for a few precious final hours, or days, with him away from the media spotlight.
That request was ultimately denied as the hospital said the home could not be adequately equipped to ensure Charlie’s life ended with dignity and without pain.
The parents agreed to hospice care but requested that he be kept alive there for up to a week so they could say a proper goodbye.
On Thursday, with the hospital and parents seemingly failing to agree on an end-of-life care plan, the judge ordered that Charlie be moved to a hospice and taken off life support soon after with only palliative care.
The hospice location was kept confidential.
“It has been a long journey and sadly the window of opportunity for Charlie to benefit from the treatment passed and his devoted parents had to let him go,” Evers said.
“Charlie fought as hard as his parents for a chance of life. But sadly he was denied the opportunity.”
Both President Trump and Pope Francis expressed support for the family.
On Friday, the pontiff tweeted: “I entrust little Charlie to the Father and pray for his parents and all those who loved him.”
The case raised questions around who ultimately should decide the fate of a child when the hospital and parents disagree.
In Britain, unlike the U.S., it is standard for courts to step in to make a determination about a patient’s best interests when that person is unable to do so.
Charlie suffered from mitochondrial DNA depletion syndrome, which was not noticeable at birth.
But at the age of 8 weeks, when it became evident that he wasn’t developing normally, he was admitted to the renowned Great Ormond Street Hospital for Children in London.
He remained there until being transferred to the hospice.
His parents kept a close watch, saying that they have not been back to their west London home once since he was admitted to the hospital.
He would have turned 1 on Aug. 4.
Problems arose when the hospital and parents disagreed over a suitable treatment plan.
Yates and Gard expressed a wish to take him to the U.S. for treatment, citing an expert there who had had success using an experimental treatment on patients with conditions similar to Charlie’s.
But the London hospital said the exercise had no meaningful hope of success and would only cause the boy unnecessary pain.
The couple raised more than $1.7 million through a crowdfunding website to take the boy to New York while the case wound its way to Britain’s Court of Appeal and then the Supreme Court.
Both upheld the April decision of High Court Judge Nicholas Francis, who said doctors could stop providing life-support treatment.
The European Court of Human Rights in Strasbourg, France, declined to take up the case last month.
It ended up back before Francis when hospital officials were contacted by medical facilities in the U.S. and Italy that said they were willing to take over Charlie’s care and had new data that could show the treatment could improve the infant’s brain function.
Dr. Michio Hirano, a neurologist at Columbia University Medical Center, flew to London to assess Charlie in person.
But test results showed that Charlie had suffered irreparable muscle damage, meaning Hirano’s therapy had no chance of working.
In a packed courtroom Monday, quiet sobs could be heard as Yates read a statement from the couple saying they had decided to let their “sweet, gorgeous and innocent” little boy go.
“We only wanted to give him a chance at life,” Yates said. “There’s now no way back for Charlie. Time has been wasted.”
“Sweet dreams, baby boy,” she said. “Sleep tight, our beautiful little boy.”