(THIS ARTICLE IS COURTESY OF THE WASHINGTON POST)
After months of fighting for Charlie Gard’s life — then pleading for time to bid him goodbye — the terminally ill British infant’s parents said Friday that he had died.
The 11-month-old boy’s case had elicited sympathy and support from Pope Francis and President Trump and inflamed an international debate over end-of-life rights.
His parents, Chris Gard and Connie Yates, announced his death a day after a British court ruled that the infant should be moved to hospice care and removed from a ventilator — as the pair pleaded for a few more days with their son, a spokesman for the family told BBC News, the Guardian and the Associated Press.
“Our beautiful little boy has gone,” Yates said Friday in a statement, according to British news reports. “We are so proud of you Charlie.”
The somber news of Charlie’s death reverberated across the world Friday evening.
Francis wrote in a message on social media, “I entrust little Charlie to the Father and pray for his parents and all those who loved him.”
Prime Minister Theresa May said she was “deeply saddened” and extended her “thoughts and prayers” to Charlie’s parents, according to BBC News. Vice President Pence said on Twitter that he was “saddened to hear of the passing of Charlie Gard.”
For several months, Charlie’s parents had been fighting in court to keep him alive. His case became the embodiment of a passionate debate over his right to live or die, his parents’ right to choose for their child and whether his doctors had an obligation to intervene in his care.
The bitter legal battle came to an exhausting and emotional end Thursday when High Court Judge Nicholas Francis made the decision to move Charlie to hospice care and let him die after Charlie’s parents and doctors could not agree on how much time the child should have to live. The judge said Charlie should be removed from the ventilator, which “will inevitably result in Charlie’s death within a short period of time thereafter.”
His parents had also lost a fight to let him die at home.
London’s Great Ormond Street Hospital, which had been treating Charlie, said it had been “a uniquely painful and distressing process” for everyone.
Charlie, who was born with a rare genetic condition called mitochondrial DNA depletion syndrome, sustained brain damage that had taken away his ability to see, hear and breathe on his own.
His parents had raised money to take him to the United States for an experimental treatment they had not yet tried, but doctors at Great Ormond Street asserted that the child had no chance of survival. The case trickled through the British court system and ended up in the European Court of Human Rights, which declined to hear it, upholding previous court rulings that it was in Charlie’s best interest to let him die.
It was that decision that thrust Charlie’s case into the international spotlight.
In June, the Vatican’s children’s hospital said it would admit the boy, with the pope saying on social media that “to defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.”
Michio Hirano, a neurology expert at Columbia Medical Center in New York, and the Vatican’s Bambino Gesù Children’s Hospital initially said the experimental medical treatment might help Charlie, according to the Associated Press. But Great Ormond Street said that idea had done nothing more than give Charlie’s parents false hope that their son could recover.
Given the American invitations to assist Charlie, the court case also raised significant differences between British and American ethical approaches to experimental treatments.
In the United States, patients can be given certain drugs even if it is known that the drugs in question will not improve their condition, insofar as knowledge of their effects may improve the conditions of others in the future.
The same it is not the case in the United Kingdom, where, by contrast, doctors cannot administer treatments that know will not improve the patient’s condition in a specific case.
It was decided earlier this week that Charlie’s parents should let him go, when it became clear that the experimental treatment they wanted for their son was no longer possible.
After further medical tests, Chris Gard told reporters, “we’ve decided it is no longer in Charlie’s best interest to pursue treatment, and we will let our son go and be with the angels.”
“Had Charlie been given the treatment sooner, he would have had the potential to be a normal, healthy little boy,” Gard added. “We will have to live with the what-ifs that will haunt us for the rest of our lives.”
After Charlie’s death, Great Ormond Street said in a statement that it sent “heartfelt condolences to Charlie’s parents and loved-ones at this very sad time.”
This story has been updated. James McAuley contributed to this report from Paris.