11:27, June 08 474 0 theguardian.com

2017-06-08 11:27:03
Supreme court rejects appeal in Charlie Gard case

The supreme court has rejected an appeal by the parents of a severely ill baby who had hoped to persuade judges that he should be kept alive so they could take him to the US for alternative treatment.

After an emergency hearing at the UK’s highest court on Thursday, the three justices decided that 10-month-old Charlie Gard, who has a rare genetic condition, should not be allowed to receive experimental medical treatment.

Both the high court and the court of appeal had 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 involved a panel of three justices: Lady Hale, the deputy president of the supreme court; Lord Kerr and Lord Wilson.

Chris Gard and Connie Yates want their son to receive the experimental treatment in the hope it may save his life.

Opening submissions for Charlie’s parents, Richard Gordon QC, 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.

The couple had said they might appeal to the European court of human rights in Strasbourg if they lost at the supreme court.

Great Ormond Street doctors had been continuing to provide life-sustaining treatment pending the court’s decision.

On Thursday, Katie Gollop QC, for Great Ormond Street hospital, told the supreme court: “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. It’s dangerous and it’s power without end.”

The courts have heard that Charlie can only breathe through a ventilator and is fed through a tube. In the family division of the high court, Mr Justice Francis said he had made his decision with the “heaviest of hearts” but with “complete conviction” that it was in Charlie’s best interests.

“All of Charlie’s treating doctors at Great Ormond Street are agreed that Charlie has reached the stage where artificial ventilation should be withdrawn, that he should be given palliative care only and that he should be allowed to die peacefully and with dignity,” the judge said. “Charlie has been served by the most experienced and sophisticated team that our excellent hospitals can offer.”

Experts in Spain also considered Charlie’s case and reached the same conclusion.

At an earlier hearing, Gollop had said therapy proposed in the US was experimental and would not help Charlie. “There is significant harm if what the parents want for Charlie comes into effect,” she told appeal court judges.

A guardian appointed to independently represent Charlie’s interests said doctors should stop life-support treatment. Victoria Butler-Cole, a barrister who was instructed by Charlie’s guardian, told the high court judge that the boy should not travel to the US for a therapy trial.

She said life-support treatment would not benefit Charlie but prolong the process of dying. “This is not pioneering or life-sustaining treatment but a purely experimental process with no real prospect of improving Charlie’s condition or quality of life.”

Supporters of the family gathered outside the supreme court in Westminster waving placards declaring “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.”