Sick infant at center of global debate
Hospital, parents at odds on fate of ailing 11-month-old boy
Eleven-month-old Charlie Gard, who was born in Britain with a rare genetic disease, is at the center of a debate, drawing in Pope Francis and President Donald Trump, over what treatment, if any, he should receive.
LONDON — Charlie Gard, who turns 11 months old on Tuesday, was born with an extremely rare genetic disease. He is blind and deaf, and he cannot breathe or move on his own.
The London hospital that is treating Charlie went to court to request permission to remove him from life support; his parents want to take him to the United States, where they believe that an experimental treatment has a chance — however remote — of saving his life.
Three courts in Britain agreed with the hospital, as did the European Court of Human Rights, which last week rejected a request by the parents to hear the case, in which they had argued that the hospital was violating the boy’s right to life.
Pope Francis and President Donald Trump have now also weighed in, adding another dimension to an extraordinarily difficult bioethical and legal matter that pits Britain’s medical and judicial establishment against the wishes of the child’s parents.
A Vatican spokesman, Greg Burke, told Vatican Radio on Sunday that the pope had been following the parents’ case “with affection and sadness” and praying “that their desire to accompany and care for their own child to the end is not ignored.”
Trump, who was not known to have expressed a view on the matter previously, wrote on Twitter on Monday that if the U.S. could help, “we would be delighted to do so.”
Both the pope and the president stopped short of criticizing the court rulings or the hospital. It was not clear if the views of the parents — who in recent days appeared to have accepted the finality of the decision — had changed in light of the new remarks.
Charlie was born on Aug. 4, 2016, wit hence p halo my op at hic mitochondrial DNA depletion syndrome. He is thought to be one of only 16 children globally with the condition.
His parents, Connie Yates and Chris Gard, have been waging a long and emotionally wrenching legal battle to keep him alive, and they have raised more than 1.3 million pounds, or about $1.7 million, to help finance experimental treatment in the U.S.
The hospital has not indicated when it would cut off life support. In a detailed statement laying out the ethical and medical justification for not allowing Charlie to travel to the U.S., the hospital said there was no cure for his condition. It said it had concluded that the experimental treatment in the U.S. would “not improve Charlie’s quality of life.”
“The clinician in the U.S. who is offering the treatment agrees that the experimental treatment will not reverse the brain damage that has already occurred,” the hospital said.