It was 10am on Monday, 3 July, and as for any president, there were about a dozen things Donald Trump could have done to occupy his time. It was just hours before a major American holiday, he had phone calls scheduled with leaders in Germany, France, Italy and Saudi Arabia, and shockwaves were just subsiding from a weekend spent lashing out at the media.
But it was Charlie Gard that commanded Trump’s attention.
“If we can help little #CharlieGard, as per our friends in the UK and the Pope, we would be delighted to do so,” the US president tweeted.
The case of the British baby with an exceedingly rare genetic disorder whose parents have fought to keep him on life support has transfixed the UK, and has also made waves across the Atlantic, though in a distinctly American fashion.
Supporters responded to the president’s tweet with psalms and quotes attributed to past presidents about the need for politicians to remember God when governing. Fox News, Rupert Murdoch’s rightwing news channel, said Trump’s tweet “forced networks to cover Charlie Gard”, a story “major networks initially refused to cover”.
Even though success was unlikely, America’s free-market health system led a world-class academic hospital in New York to offer to treat the baby with funds the Gards raised through private donations from around the world, assuming legal hurdles could be cleared in the US.
Columbia University Medical Center neurologist Dr Michio Hirano claimed he had “an experimental therapy being developed in my lab [that] could provide meaningful clinical improvement in Charlie’s condition”. In an American twist, the doctor at one time had a financial stake in the treatment.
And even during Republicans’ attempts to remove health insurance from as many as 32 million people, two US congressmen introduced legislation to expedite the process for the Gard family to come to the US.
“Let both our nations be reminded of the risk incurred when doctors or bureaucrats are empowered with ultimate authority to determine which lives are unworthy of being lived,” said Congressmen Brad Wenstrup and Trent Franks. “Let us never forget that every human life – no matter how great or small, young or old – has inherent dignity and its value cannot be measured.”
Hirano’s hopes to treat Gard faded last week, when MRI scans revealed even a last-ditch experimental treatment was unlikely to bring any improvement. Ultimately, that news lead to Gard’s parents agreeing on Monday to take him off life support.
All medical experts who examined Gard agreed: the baby was terminally ill. And nearly all ethicists agreed that there was no mandate to prolong life and, perhaps, suffering. But overwhelming evidence did not preclude debate about the best course of action for Gard’s family or, especially in conservative circles, dismay that courts could overrule a family.
“Our hearts weep for #CharlieGard,” the conservative senator Ted Cruz tweeted. “Our prayers are w/ him. Pls read [an attached statement from Charlie’s father] & ask WHY govt should have power to decide who lives & dies. It’s wrong.”
Though the number of cases in which American courts intervene in patients’ care is “diminishingly small”, according to the director of Harvard Medical School’s center for bioethics, Dr Robert Truog, the choices Gard’s parents have been forced to make are tragically common.
“Parents are constantly having to struggle with this,” said Truog, who also works with gravely ill children at Boston Children’s Hospital. “A large part of my day is sitting down with parents whose children have severe and life-threatening illnesses.
“You talk about – when do you reach a point where the best thing for the child is making the quality of what they have left as good as possible, but no longer trying to prolong their life?”
The head of bioethics at New York University Langone Medical Center, Arthur Caplan, called for politicians such as Cruz and Trump to put their money where their mouth is.
“Those such as President Trump who say they want to help Charlie should be telling us what they are budgeting to expand access to healthcare including both novel experimental interventions and proven treatments for all American kids,” he wrote in the Hill. “Anything less,” he said, “is just empty, feel-good, cheap politician hot air.”
The case especially animated rightwing, pro-life groups in the US. Trump’s tweet set off flurries of activity from lawmakers and campaigners who argued British courts had pitted parents against government.
“Whose ethics will prevail in the case of Charlie Gard?” said pro-life Susan B Anthony List president Marjorie Dannenfelser, a few days after Trump’s tweet. “His parents fighting for his life? Or a hospital fighting against so-called ‘futile care’? Medical authoritarian rule or parental rights and responsibility?
“England, let your better angels fly: let these parents love their child,” she said.
However, “as sad as that case is”, Truog said, “this is not an unusual situation at all. This is something going on at all children’s hospitals around the world.”