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Charlie Gard's parents storm out of High Court after row with judge during hearing

'I didn't say he's suffering,' mother of terminally ill infant shouts

Katie Forster
Health Correspondent, High Court
Thursday 13 July 2017 08:54 EDT
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Charlie Gard judge says he will change his mind if evidence suggests he should

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Charlie Gard's parents have stormed out of a High Court hearing over new evidence on whether their terminally ill son should be allowed to receive experimental treatment.

Chris Gard and Connie Yates' angry departure from the courtroom followed outbursts over comments they had made three months ago brought up by Mr Justice Francis.

The judge said in a previous hearing the parents had told the court they were not "fighting for what he had now" and were seeking an improvement in quality of life for Charlie, who has a rare genetic disease.

"I didn't say he's suffering," shouted Ms Yates angrily before leaving the room with Mr Gard, followed by the couple's solicitor and leaving Charlie's toy monkey on the court bench.

The dramatic departure came during a tense court hearing before which the couple in their 30s were given 48 hours to provide new evidence for why baby Charlie should receive nucleoside therapy.

Lawyer Grant Armstrong, representing the parents, presented the judge with a letter from the Bambino Gesu hospital in Rome and information on the potential benefits of the unproven treatment from a US doctor offering to provide it.

The doctor said there was a 56 per cent chance the treatment, given is an oral solution, could pass the blood-brain barrier in Charlie and lead to potential improvement in his condition.

"These nucleosides exist in the human body," said Mr Armstrong, adding that unlike many cancer treatments the therapy is non-toxic and has not been shown to cause worse side-effects than diarrhoea. "They are part of DNA"

Consulting further medical evidence provided by Italian researchers in a letter to Great Ormond Street Hospital, where Charlie is being cared for, Mr Justice Francis raised concerns that tests on mice of the new therapy could not be extrapolated to Charlie's condition.

"It's an absolutely fundamental issue that we've all got to grapple with," he told the court

Mr Armstrong said the doctor's view was that "this is the appropriate treatment" for Charlie, who was born on 4 August 2016, adding that it was rare that a court case had to tackle "the cutting edge of science".

But the judge asked: "Who had been treating Charlie for the past 12 months?"

Doctors at Great Ormond Street have argued that it is kinder to turn off life support for the baby, who cannot move or breathe unaided.

The judge said it remained to be seen whether the treatment would affect fits and seizures suffered by Charlie, bringing up the parents' previous comments as he discussed the baby's quality of life.

Further evidence will be heard by a doctor in New York via video link this afternoon but the court was told it was unlikely a decision would be reached today.

Mr Justice Francis said the key issue raised in the new evidence was "not whether [Charlie] has brain damage, but whether he has irreversible brain damage", adding that the medical consensus was that his fits and seizures were caused by his genetic deficiency.

Ms Yates shook her head vigorously as he asked whether the treatment would be able to repair structural damage to Charlie's brain and not simply cross the barrier between the blood and the brain.

He called for an independent medical expert​ to measure Charlie's head circumference within 24 hours. If it has not grown, this can be used as evidence of the severity of the baby's brain damage.

Ms Yates said she had measured Charlie's head herself, having spent hours at her son's bedside. But the judge told her an independent opinion was needed: "I'm being told records from a world-famous hospital are wrong, I've got to have more than you're telling me"

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