15:16, June 08 79 0 theguardian.com

2017-06-08 15:16:03

 

Charlie Gard's parents make emergency appeal to European judges

The parents of a severely ill baby who believe he should be taken to the US for alternative medical therapy have made an emergency appeal to European judges after the British supreme court rejected their application.

In a highly unusual development, Great Ormond Street hospital has been ordered to continue life-saving treatment for 10-month-old Charlie Gard until 5pm on 9 June, after an appeal was lodged with the European court of human rights in Strasbourg.

Earlier on Thursday, following an afternoon of legal argument, three supreme court justices ruled that the child, who has a rare genetic condition, should not receive experimental medical treatment in the US.

A spokesperson for Great Ormond Street hospital said: “This is a very sad day for Charlie’s parents and family and our thoughts are with them and Charlie.

“We are led by the legal process and when the time comes for a change in treatment, we will support the parents in every way that we can, aiding them through next steps. This would normally take place over at least a number of days. For now, our priority is to ensure Charlie remains well cared for and to offer our support to Charlie’s devoted parents at this distressing time.”

Chris Gard and Connie Yates want their son to receive nucleoside bypass therapy in the hope it may save his life. Both the high court and the court of appeal have previously ruled that life-support treatment at Great Ormond Street children’s hospital in London should be stopped, and that Charlie should be allowed to “die with dignity”.

The hastily arranged hearing at the supreme court on Thursday afternoon involved a panel of three justices: Lady Hale, the deputy president of the supreme court, Lord Kerr and Lord Wilson. Delivering their ruling, Lady Hale said that the parents’ application did not raise an arguable point of law.

Established human rights law dictates that the rights of a child should take precedence over the rights of their parent, Hale stressed in her decision. “The child’s interests must prevail,” she said. Lawyers for the child’s guardian appointed by the court have argued against sending Charlie to the US, saying that the proposed treatment would be futile.

Charlie’s mother ran out of court weeping when the decision to reject the appeal was announced by Lady Hale. “How can they do this,” she cried. “They are lying. We are going to America.”

ECHR judges in Strasbourg will now take on responsibility about whether to extend any order to continue treating Charlie who is being kept alive by a mechanical ventilator. Any ECHR order would formally be binding on the UK government rather than Great Ormond Street hospital.

Earlier Katie Gollop QC, for Great Ormond Street hospital, had told the supreme court that: “The [alternative therapy in America] would take time and over the weeks and months Charlie would be forced to remain in his parlous condition: he can’t see, can’t hear, can’t cry, can’t swallow. He has a mechanism that causes his lungs to go up and down. We don’t know whether he suffers pain.”

She added: “There are children whose conditions we cannot cure and whose conditions we cannot ameliorate. It happens very often and the parents of that child don’t want to look back later and think there might have been something they could have done for this child which they left undone.”

But, she said, the argument being advanced on behalf of Charlie’s parents was that the child should have no voice and it was entirely for the parents to decide. “The parents are deemed to be … the sole and only determiner of what can happen. [That’s] dangerous and it’s power without end.

Opening submissions for Charlie’s parents, Richard Gordon QC, had told the court: “The issue is whether the state has the power to intrude on decisions the parents have made in order to mandate that child’s death before it might come to an end.

“We say there’s a boundary beyond which the state cannot simply go without the strongest justification.

“These are model parents trying to do all they possibly can for the benefit of their child. Their view on what is best for Charlie differs from the court.”

Gordon said that where parents are agreed, questions of upbringing “should not normally come before the court”. Parental responsibility, he added, was being eroded.

Treatment in the US, he said, would not be intrusive but involve eating powder given in his normal food. Charlie, who was born on 4 August last year, has a form of mitochondrial disease, a condition that causes progressive muscle weakness and brain damage. His parents believe nucleoside bypass therapy treatment could be beneficial.

The court has made an order banning identification of the doctors and medical staff involved in the treatment at Great Ormond Street hospital and the name of the hospital in the US.

Gard and Yates, who are in their 30s and live in Bedfont, west London, have launched a fundraising appeal to help pay for doctors’ bills in the US. It reached a £1.2m target before the high court trial. That figure has now topped £1.3m after more than 83,000 people made donations.

Medical experts in Spain were even consulted to for a second opinion about the efficacy of the US treatment proposed for Charlie. They supported the view of doctors in Great Ormond Street hospital that the therapy was experimental and, given his condition, unlikely to have a beneficial outcome.

Supporters of the family gathered outside the supreme court in Westminster waving placards with the URL Charliesfight.org.

Michelle Standen, from Deal in Kent, said: “There’s a hospital ready and waiting. It’s disgusting. Why not allow him to go? The funds are there. He’s not in pain. All the time they have been doing the court cases, they could have been treating him.”

Another supporter, Sarah Fisher, who knows friends of the family, said: “I have not seen any evidence that the doctors are right. The doctors seem to have made an early clinical decision and don’t want to back down.

“He’s left in limbo for five or six months. It’s not fair. We should listen to the parents in this country rather than looking down our nose at them. They are the ones who spend all their time with the child.”