The parents of a severely ill baby will take their legal battle to an emergency hearing at the supreme court next week in the hope of persuading judges that he should be treated in the US.
Chris Gard and Connie Yates want their nine-month-old son, Charlie, who has a rare genetic condition and brain damage, to have experimental medical treatment hat they believe might save his life.
Both the high court and court of appeal have already ruled that life support treatment at Great Ormond Street Children’s Hospital, in London, should cease, and that Charlie Gard should be allowed to “die with dignity”.
The hastily arranged hearing at the supreme court on 8 June will involve a panel of three justices. They will decide whether to grant permission for a fuller hearing at a later date.
Consultants from Great Ormond Street have already given evidence saying the therapy proposed by an American doctor is experimental and would not help. Appeal court judges have ordered hospital doctors to continue providing life-support treatment until midnight on 8 June.
Charlie, who was born on 4 August 2016, has a form of mitochondrial disease, a condition that causes progressive muscle weakness and brain damage. Specialists in the US have offered a treatment called nucleoside therapy.
His parents, who are in their 30s and come from Bedfont, Hounslow, west London, have appealed for money on a GoFundMe page to cover doctors’ bills in America. They reached their £1.2m target before the high court trial. Donations are still coming in and the fund has now topped £1.3m.
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” for 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doctors at Great Ormond Street are agreed that Charlie has reached the stage where artificial ventilation should be withdrawn, that he should be given palliative care only and that he should be allowed to die peacefully and with dignity,” the judge said.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 had also considered Charlie’s case and reached the same conclusion.
Francis said Charlie’s parents had, understandably, grasped at the possibility that the therapy might be “pioneering treatment”. But he added: “There is unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage. I dare say that medical science may benefit, objectively, from the experiment, but experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him.”
Richard Gordon QC, who led Charlie’s parents’ legal team, had told appeal judges that the case had raised very serious legal issues. “They wish to exhaust all possible options,” Gordon said in a written outline of Charlie’s parents’ case. “They don’t want to look back and think ‘what if?’ This court should not stand in the way of their only remaining hope.”
Lawyers, who represented Charlie’s parents for free, said Francis had not given enough weight to Charlie’s human right to life. They said there was no risk that the proposed therapy in the US would cause Charlie significant harm.
Katie Gollop QC, who led Great Ormond Street’s legal team, 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 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, had told Francis that the little 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.”
The appeal judges Lord Justice McFarlane, Lady Justice King and Lord Justice Sales, paid tribute to the couple but said Francis had been entitled to reach the conclusions he had reached.
