LONDON – Charlie Gard, the terminally ill British baby at the center of a legal and ethical battle that attracted the attention of Pope Francis and U.S. President Donald Trump, died Friday. He was one week shy of his first birthday.
Charlie suffered from a rare genetic disease, mitochondrial depletion syndrome, which left him brain damaged and unable to move his limbs or breathe unaided.
A family spokeswoman, Alison Smith-Squire, confirmed Charlie’s death on Friday, a day after a judge ordered that he be taken to a hospice for his final hours.
“Our beautiful little boy has gone, we’re so proud of him,” his mother Connie Yates said in a statement.
Charlie’s parents raised more than 1.3 million pounds ($1.7 million) to take him to the United States for an experimental medical therapy they believed could prolong his life. But Charlie’s doctors at Great Ormond Street Hospital in London objected, saying the treatment wouldn’t help and might cause him to suffer.
The dispute ended up in court.
Charlie’s case became a flashpoint for debates on the rights of both children and parents, on health-care funding, medical interventions, the responsibilities of hospitals and medical workers and the role of the state.
After months of legal battles, High Court judge Nicholas Francis ruled Thursday that Charlie should be transferred to a hospice and taken off life support after his parents and the hospital failed to agree on an end-of-life care plan for the infant.
Under British law, it is common for courts to intervene when parents and doctors disagree on the treatment of a child. In such cases, the rights of the child take primacy over the parents’ right to decide what’s best for their offspring. The principle applies even in cases where parents have an alternative point of view, such as when religious beliefs prohibit blood transfusions.
The case made it all the way to Britain’s Supreme Court as Charlie’s parents refused to accept decisions by a series of judges who backed Great Ormond Street. But the Supreme Court agreed with the lower courts, saying it was in Charlie’s best interests that he be allowed to die.
Offers of help for Charlie came from Dr. Michio Hirano, a neurology expert at New York’s Columbia Medical Center and from the Vatican’s Babino Gesu pediatric hospital. Both said an experimental treatment known as nucleoside therapy had a chance of helping Charlie.
Great Ormond Street Hospital disagreed. It said the proposed treatment had never been tried on a human with Charlie’s condition and no tests had ever been done on mice to see whether it would work on a patient like Charlie.
The case caught the attention of Trump and the pope after the European Court of Human Rights refused to intervene. The two leaders sent tweets of support for Charlie and his parents, triggering a surge of grassroots action, including a number of U.S. right-to-life activists who flew to London to support Charlie’s parents.
The hospital, Britain’s premier children’s hospital, reported that its doctors and nurses were receiving serious threats over Charlie’s case. London police were investigating.
On Friday night, the hospital offered its condolences to Charlie’s family.
“Everyone at Great Ormond Street Hospital sends their heartfelt condolences to Charlie’s parents and loved-ones at this very sad time,” the hospital said in a statement.
Following news of Charlie’s death, U.S. Vice President Mike Pence posted on Facebook: “Saddened to hear of the passing of Charlie Gard. Karen & I offer our prayers & condolences to his loving parents during this difficult time.”
The intervention of two of the world’s most powerful men made the case a talking point for the planet. Images of Charlie hooked to a tube while dozing peacefully in a star-flecked navy blue onesie graced websites, newspapers and television news programs.
Medical ethicist Arthur Caplan said the Charlie Gard case shows how the medical profession is struggling to adjust to the age of social media, which puts the general public in the middle of decisions that in the past would have been private issues for doctors and the family.
“I do think that in an era of social media, it is possible to rally huge numbers of people to your cause,” said Caplan, of New York University’s Langone Medical Center. “The medical ethics have not caught up.”
The heated commentary prompted Judge Francis to criticize the effects of social media and those “who know almost nothing about this case but who feel entitled to express opinions.”
In the end, the increased attention did little for Charlie.
His parents gave up their legal battle on Monday after scans showed that Charlie’s muscles had deteriorated so much that the damage was irreversible.
“Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you,” his parents wrote when they announced their decision. “We had the chance but we weren’t allowed to give you that chance.
“Sweet dreams baby. Sleep tight, our beautiful little boy.”