British baby Charlie Gard succumbs at 11 months
World attention was focused on the efforts of his parents to save their son
Charlie Gard, a terminally LONDON ill British baby at the center of a high-profile legal fight to take him to the United States for treatment, has died. He was 11 months old.
Charlie’s mother, Connie Yates, confirmed his death on Friday. “Our beautiful little boy has gone, we are so proud of you Charlie,” she said in a statement.
Charlie died in a London hospice, where he was transferred on Thursday after the British High Court ruled — against his parents wishes — that he should not be allowed to die at home. After a five-month legal fight, the same court ruled that his rare genetic disease that caused progressive brain damage and muscle weakness would not respond to experimental therapy being offered by an American neurologist.
Charlie’s condition was little known. Mitochondrial DNA depletion left him unable to move. He couldn’t breathe without a ventilator. He was blind and deaf. However, over the course of his parents’ battle to secure for him a radical, untested therapy in the U.S., his plight, and the dedication of Yates and her husband Chris Gard, became well known — it even attracted the attention of President Trump and Pope Francis.
Charlie died one week before his first birthday.
At birth, Charlie appeared to be healthy. His parents discovered he had a genetic disorder — only diagnosed in an estimated 15 other people — at a few months when he began losing movement in his arms and legs and started having frequent seizures.
Until his transfer to the hospice, Charlie had been cared for at London’s Great Ormond Street Hospital, one of the world’s leading pediatric hospitals. As his health started declining, his parents began to disagree with the hospital’s doctors over what type of treatment Charlie should be offered.
Researching their son’s condition, Yates and Gard came across a doctor at Columbia University Medical Center who was willing to treat Charlie with nucleoside bypass therapy. This doctor, Michio Hirano, had tried the treatment on patients with a far less severe form of Charlie’s disorder to varying degrees of success. They thought it was worth a shot. Over the next several months, they raised $1.7 million to pay for it.
But Great Ormond Street Hospital disagreed and a legal fight erupted, because in Britain, unlike is usually the case in the U.S., it is the courts,not the patient or family, who decide how to proceed when there is a dispute about medical treatment. Yates and Gard took the case all the way to the British Supreme Court and the European Court of Human Rights. Both upheld the High Court’s ruling, which to the parents was a brutal and shocking one: Charlie’s life-support machines should be turned off.
Yet the hospital, backed by British courts, saw it differently. Switching off Charlie’s life-support treatment would allow him to die in dignity and perhaps even put an end to his pain, which doctors couldn’t fully determine whether he was experiencing.
Meanwhile, the world was watching.
“If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so,” Trump tweeted. Pope Francis said he was observing the case “with affection and sadness.” Several Republican congressmen sponsored legislation aimed at granting Charlie and his family U.S. residency. Others spoke of citizenship.
On Monday, after Hirano told a British judge that he no longer believed Charlie would respond to treatment, Yates and Gard dropped their legal fight to take him abroad. Still, they had one last wish, to take their son home to die.
“We just want some peace with our son, no hospital, no lawyers, no courts, no media, just quality time to say goodbye,” Yates said in a statement.
They lost that fight as well. The hospital was concerned about the practicality of sending Charlie home given his complex care needs.
The hospital offered its condolences on Friday evening.
“Our beautiful little boy has gone, we are so proud of you Charlie.” Connie Yates, the boy’s mother
Chris Gard and Connie Yates with their son, Charlie Gard. Yates said Friday the boy, who had a rare genetic disease, died.