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Terminally Ill Baby Charlie Gard Will Move To Hospice Care To Die

A teddy bear was set up by supporters of the family of British baby Charlie Gard outside the Royal Courts of Justice in London on Monday. After months of legal conflict over whether an experimental treatment might help Charlie or would only cause suffering, the baby will be transferred to a hospice facility to die.
Chris J. Ratcliffe
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AFP/Getty Images
A teddy bear was set up by supporters of the family of British baby Charlie Gard outside the Royal Courts of Justice in London on Monday. After months of legal conflict over whether an experimental treatment might help Charlie or would only cause suffering, the baby will be transferred to a hospice facility to die.

Updated at 1:42 p.m. ET

Charlie Gard, a terminally ill British baby whose parents fought in court to transfer him to the U.S. for treatment, will be moved to a hospice facility to die.

A British judge approved the transfer plan on Thursday, days after Charlie's parents dropped their efforts to get him experimental treatments.

Charlie cannot breathe on his own. His life support will be withdrawn shortly after the transfer takes place, the BBC reports.

As NPR's Joanna Kakissis reports from London, Charlie has a rare genetic disorder, which left him brain-damaged and unable to breathe on his own:

"His mother, Connie Yates, told the BBC earlier this year that they wanted to take him to the U.S. for an experimental treatment: 'If we don't get this opportunity, he's going to die. And even if it doesn't work, which I think it will, we know that we've done everything.'

"But Charlie's doctors at Great Ormond Street Hospital said this experimental therapy, which not undergone clinical trials, likely would not benefit him — and might even harm him.

"British law allows doctors to override the wishes of parents in treatment decisions if it's in the child's best interest."

The resulting legal fight lasted for months and attracted attention from around the globe, with President Trump and Pope Francis, among others, chiming in.

Last week, the U.S. neurologist who was previously willing to offer the experimental treatment looked at new MRI scans of Charlie and concluded the treatment would not be effective. Chris Gard, Charlie's father, later told reporters that he and Yates were preparing for their son's death.

"We are now going to spend our last precious moments with our son Charlie, who unfortunately won't make his first birthday in just under two weeks' time," he said. Charlie's parents still say that the baby might have been helped if the treatment had been administered earlier.

Gard and Yates wanted to take their son home to die, "but his doctors said it would be difficult to provide him with special ventilators there," Kakissis reports.

If Charlie had to be in hospice care, they asked for him to be ventilated for several days so they could spend more time together. But the hospital objected that hospices weren't set up to care for a ventilated child for an extended period of time, Reuters reports.

Instead, the judge has approved a plan for Charlie to be transferred to an unnamed hospice, where he will "inevitably" die shortly after being taken off life support, the BBC says.

Yates told Sky News in a statement that the hospital has "denied us our final wish."

"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," she said. "We've had no control over our son's life and no control over our son's death."

The hospital said in a statement that Charlie has such "severe and complex needs" that attempting to keep him alive outside of the hospital would be dangerous. Specifically, they said, it would risk "an unplanned and chaotic end to Charlie's life," which the hospital called "unthinkable," Sky News reports.

"Every single one of us wishes there could have been a less tragic outcome," the hospital said.

Copyright 2020 NPR. To see more, visit https://www.npr.org.

Camila Flamiano Domonoske covers cars, energy and the future of mobility for NPR's Business Desk.
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