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Saving Charlie Gard: It's a parent's decision, not the state's

On Aug. 4 of last year, Connie Yates and Chris Gard, a young British couple, welcomed their first child into the world, a son they named Charlie. Charlie failed to thrive, and soon they realized there was something wrong. He was admitted to a leading pediatric hospital and put on a ventilator because he was having trouble breathing. Soon he started having fits. Charlie was diagnosed with an extremely rare genetic condition known as mitochondrial DNA depletion syndrome, and doctors told them the prognosis was grim. After the baby had spent several months in a London hospital, British doctors told the family it was in Charlie's best interest to let him die. Charlie's parents refused and, after finding a U.S. doctor eager to offer an experimental treatment, went to court to beg for their son's life, however short it might be.

Now their child is at the centre of an international firestorm over medical ethics, what makes a life worthwhile – and above all, who decides.

As the court hearings drag on, Charlie has been weaponized by U.S. President Donald Trump and the Republican right, who are using the case for shameless demagoguery. Mr. Trump has declared that Charlie is more than welcome in the United States, which offers the best treatment in the world (for those who can pay, although he didn't mention that). His Vice-President, Mike Pence, claims the case exposes the evils of a state-run health-care system where judges, not parents or patients, make the ultimate decisions. "The heartbreaking story of the 11-month-old Charlie Gard in England is a story of single-payer health care," he told talk-show host Rush Limbaugh. "The American people ought to reflect on the fact that for all the talk on the left about single payer, that's where it takes us." The U.S. Congress has even granted permanent resident status to baby Charlie and his parents so they can seek treatment in the United States.

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But Charlie's desperate parents can't take him anywhere unless a judge agrees. And successive levels of courts – including the British Supreme Court – have sided with the doctors. The doctors argue that Charlie has suffered "catastrophic and irreversible brain damage," and that any further treatment would only add to his suffering.

Enter American neurologist Michio Hirano, who believes there's a decent chance that experimental treatment might yield a small improvement in brain function. Is it worth a shot? His parents think so. Through crowdfunding, they've raised more than £1.3-million ($2.1-million) to cover the cost. The doctor has been allowed to examine the baby and offer evidence for a last-ditch appeal to yet another judge, who has promised a final ruling by July 25.

Unsurprisingly, the British public is divided – mostly along class lines. People who read The Times tend to think the parents are deluded and selfish and should defer to the experts. (Charlie's dad is a postman.) Folks who read the Daily Mail are sympathetic to the parents and think the doctors are cold-hearted. Even the Pope has weighed in, on the parents' side. In the United States, people's opinions are heavily coloured by politics. It is distasteful (to put it mildly) to watch Republicans grandstanding over baby Charlie when they don't show the least concern about denying proper health care to millions of U.S. kids. Commentators are sharply divided about the moral of the story. One liberal writer argues the real story is our refusal to accept mortality. One conservative writer argues the real story is Europe's expanding culture of death. Take your pick.

Cases such as this offer no right answers. Both the parents and the doctors are acting from deeply felt ethical convictions. The question is: Whose wishes should prevail? My view on this has changed over the years. I now think it's the parents'. These decisions are as much about values and beliefs as they are about medicine. They do not belong in the hands of judges and courts and lawyers and the administrative state, but in the hands and hearts of individuals and the families who love them.

The exception is parents who want to deny their children life-saving procedures, usually on religious or cultural grounds. They should be overruled. If Charlie's parents wanted to turn down standard treatment in favour of peach-pit injections, that would not be okay. Nobody should die because of someone else's beliefs.

But Charlie's parents have embraced everything standard medicine has to offer. Now they want to give him one last chance. Maybe it's not much of a chance, and maybe any life he gains won't be worth living. But that's a value judgment, too. And he's not your kid. And Charlie's parents are not making outlandish demands on the system. They simply want to take their kid somewhere else and pay for it with their own money. Rich people do it all the time. The well-meaning state should let Charlie free.

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About the Author

Margaret Wente is one of Canada's leading columnists. As a writer for The Globe and Mail, she provokes heated debate with her views on health care, education, and social issues. She is a winner of the National Newspaper Award for column-writing.Ms. Wente has had a diverse career in Canadian journalism as both a writer and an editor. More

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