Toronto Star

Emotional outburst at U.K. court hearing for critically ill child

Questions from judge prompt infant’s parents to storm out

- CAROLINE SPIEZIO THE ASSOCIATED PRESS

LONDON— The parents of a baby with a rare disease stormed out of a London court hearing in an emotional outburst Thursday, as the couple tried to convince a judge to let them take their critically ill child to the United States for medical treatment.

Charlie Gard’s parents are challengin­g the view of Britain’s most famous children’s hospital, arguing that treatment abroad is in the best interest of the11-month-old suffering from a rare genetic condition.

A succession of judges has backed specialist­s at Great Ormond Street Hospital, who argue experiment­al treatment in the U.S. won’t help and may cause suffering for Charlie. The parents hoped to present fresh evidence to alter that view.

Two hours into the High Court hearing, questions from Judge Nicholas Francis prompted tensions to boil over. Charlie’s mother, Connie Yates, accused Francis of misquoting her earlier statements about Charlie’s quality of life.

“We said he’s not suffering and not in pain,” Yates yelled. “If he was, we wouldn’t be up here fighting.” Chris Gard then slammed his water cup down and the couple left the courtroom.

Charlie suffers from mitochondr­ial depletion syndrome, a rare genetic disease that has left him brain damaged and unable to breathe unaided. The hospital says there is no known cure and believes his life-support systems should be turned off.

The parents want to try — but it isn’t up to them. British judges are tasked to intervene when families and doctors disagree on the treatment of people unable to speak for themselves. The rights of the child take primacy, with the courts weigh- ing issues such as whether a child is suffering and how much benefit a proposed treatment might produce.

“Unlike the U.S.A., English law is focused on the protection of children’s rights,” said Jonathan Montgomery, a professor of health care law at University College London. “The U.S.A. is the only country in the world that is not party to the U.N. Convention on the Rights of the Child; it does not recognize that children have rights independen­t of their parents.”

Montgomery said that while it was right to consider the views of Charlie’s parents, the court will not make a determinat­ion on this basis.

“This case is about Charlie’s rights and what the evidence tells us that they require,” he said. “That will be the only considerat­ion of the judge at the hearing.”

Francis, who ruled in favour of doctors in April, says he will consider any new evidence. The courtroom was packed as Francis heard arguments on difference­s of medical opinion.

“We are continuing to spend every moment, working around the clock to save our dear baby Charlie,” the couple said in a statement before the hearing. “We’ve been requesting this specialize­d treatment since November, and never asked the hospital, courts or anyone for anything — except for the permission to go.”

Britain’s Supreme Court has ruled it’s in the boy’s best interests to be allowed to die with dignity. The European Court of Human Rights rejected an appeal from the parents, which stalled their legal options.

But days afterward, U.S. President Donald Trump and Pope Francis gave the parents new hope by shining an internatio­nal spotlight on the ethical debate.

Petitions have circulated to offer support and others have arrived at Charlie’s bedside to pray.

Adecision was not expected Thursday.

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