The parents of the critically ill baby Charlie Gard have walked out of court at a hearing arranged to determine his future, after a disagreement with the judge.
Chris Gard, 33, and Connie Yates, 31, are challenging a previous decision by the high court, upheld on appeal, which denies them permission to take their son from Great Ormond Street hospital (Gosh), where he is on life support, to the US for nucleoside therapy.
When Mr Justice Francis referred to previous comments made by Charlie’s father – to the effect that he would not want his son to continue living in his current condition if there were no prospect of improvement – Gard and Yates suggested that that was inaccurate.
Yates said: “I did not say that.” She added that they did not believe Charlie, 11 months, was suffering. Gard then angrily stormed out, closely followed by his wife.
Francis then read out previous comments by Gard to which he had alluded. He adjourned proceedings for lunch shortly afterwards.
The walkout on Thursday came after an emotional hearing on Tuesday punctuated by angry outbursts by Charlie’s parents. They returned to the high court after lunch on Thursday and Francis told them: “I completely understand this is desperate for you.” He encouraged them to let him know if they needed a break during proceedings.
The court heard that new evidence about the chances of Charlie recovering after receiving experimental treatment called the original judgment into question.
Speaking by video-link from the US, a professor of neurology, who could not be named for legal reasons, said: “I estimate the chance of meaningful success [of the treatment] to be at least 10%.”
He clarified that it was a “conservative estimate” of improvement in muscle strength. He said there was a small but significant chance of improvement in brain function, observing that he had “overreached” when he had said at the April hearing that it was likely Charlie’s brain damage was irreversible.
He told the court that new data showed that for five patients – of nine with a different but similar deficiency who had the same therapy it was proposed to give Charlie – the outcome had been reduced time on a ventilator. One person came off the machine completely. “Our understanding of therapies has evolved over the past few months,” the professor said.
It emerged in court that the professor had contacted the White House regarding the purportedly new evidence on 4 July after discussions. Donald Trump, the US president, tweeted on 3 July that he would be happy to help Charlie. The professor said based on new data and fresh analysis of existing data he had revised up the chances of crossing the blood-brain barrier, from the 50% he had previously quoted to 90%.
As he listened to his evidence, Gard clutched a cuddly toy monkey. When the professor said Charlie “does not seem to be in any pain”, contradicting the position of Gosh, Yates clenched her fist. She did so again when he said the only way to tell if Charlie was “Breslin damaged” was to “try the [nucleoside] therapy”.
The professor also called into question Gosh’s assertion that Charlie had brain damage. He said MRI and EEG scans indicated “disorganisation of brain activity but that does not necessarily indicate structural damage”.
Grant Armstrong, representing Charlie’s parents, said the evidence “renders unsafe” the court’s previous finding of futility with respect to Charlie’s improvement chances.
As well as the quality of the evidence, the case will hinge on whether the findings are new, as the judge has made clear the hearing is not a review of material previously put before the court.
Katie Gollop QC, representing Gosh, said: “The evidence relied on heavily, as I understand it, is not new.”
She challenged the US professor on his inability to quantify what he meant when he suggested “significant” improvement in brain function was possible. He later said the chance was “significantly above zero” but refused to elaborate.
Submissions entered into court on behalf of Gosh said: “It has been and remains the unanimous view of all those caring for Charlie at Gosh that withdrawal of ventilation and palliative care are all that the hospital can offer him consistent with his welfare.
“That is because, in the view of his treating team and all those from whom Gosh obtained second opinions, he has no quality of life and no real prospect of any quality of life.”
The judge ordered an independent measurement of Charlie’s head size after hearing there was disagreement between Gosh and Charlie’s mother over whether it had got bigger, which would be a sign of brain growth or lack thereof.
He said: “We all want what’s best for Charlie and if there’s important evidence that suggests my decision should be changed, I will change it.”
The case had previously gone to the European court of human rights, with judges at every turn backing the view of Gosh doctors who said Charlie’s condition was irreversible and that further treatment could cause him suffering.
But the hospital requested a new hearing after receiving two letters – one from seven doctors and another from a solicitor representing Charlie’s parents – claiming the chances of the treatment being successful were higher than previously thought.
The earlier rulings forbade staff from transferring Charlie for nucleoside therapy anywhere in the world without going back to court.
The case has attracted intense public interest, including from US pro-life groups. Another rally in support of Charlie’s parents was held before Thursday’s hearing and the proceedings were broadcast into a second courtroom to accommodate those wanting to watch them.
The hearing continues.
