Charlie Gard, the British baby with a terminal illness who became subject to a high-profile legal dispute, has died in hospice care, according to multiple media reports.
The Guardian, citing Gard’s parents, reports that the infant died on Friday, one day after being transferred to an unidentified hospice facility.
Charlie had an rare genetic disorder known as MMDS, which affected his brain and his muscles. He could not move his limbs or breathe on his own.
His case moved from family tragedy to international legal drama because of a disagreement between his parents and his doctors over his care. Chris Gard and Connie Yates, the parents, wanted Charlie to be transferred to the U.S. for experimental treatments. “Even if it doesn’t work, which I think it will, we know that we’ve done everything,” Yates told the BBC in June.
But the Great Ormond Street hospital said the treatment would not be able to treat Charlie’s rare disease, and might harm him. The hospital said its own doctors and independent medical experts agreed the treatment “would prolong Charlie’s suffering.”
“British law allows doctors to override the wishes of parents in treatment decisions if it’s in the child’s best interest,” NPR’s Joanna Kakissis reported. And that’s exactly what happened. The hospital would not allow Charlie to be transferred, and British courts upheld that decision.
The case attracted global attention, with President Trump and Pope Francis, among others, chiming in.
Eventually, the U.S. doctor who was willing to offer the experimental treatment said that, based on the most recent MRI scans, he didn’t believe he could help. Charlie’s parents dropped their effort to transfer him, saying the treatment might have helped if they’d been allowed to access it sooner, but that they now agreed it was too late.
The heartbreaking dispute didn’t end there. Charlie’s parents wanted to take him home to die. If they couldn’t take him home, they wanted to keep him alive on a respirator in a hospice facility so they could have several more days together.
“We just want some peace with our son, no hospital, no lawyers, no courts, no media, just quality time with Charlie away from everything to say goodbye to him in the most loving way,” Yates told Sky News on Thursday.
But the Great Ormond Street hospital said it was impossible to provide care to Charlie at home, given his complex medical needs. And they said hospice facilities weren’t set up to provide the kind of intensive life support necessary to keep Charlie alive for days. Attempting to do so could risk “an unplanned and chaotic end to Charlie’s life,” the hospital said.
To avoid unnecessary suffering, the doctors said Charlie should be transferred to a hospice and removed from life support soon after. A judge agreed to that plan.
“We’ve had no control over our son’s life and no control over our son’s death,” Yates said on Thursday, when the decision was announced.
“Charlie’s parents have tirelessly advocated for what they sincerely believed was right for their son, and nobody could fault them for doing so,” Great Ormond Street hospital said in its statement. “The priority of our medical staff has always been Charlie. … Every single one of us wishes that there could have been a less tragic outcome.”
“Our beautiful little boy has gone,” Yates said on Friday, according to the BBC. “We are so proud of you Charlie.”
Charlie died in an unidentified hospice facility. He was 11 months old.