The European Court of Human Rights has given a last-minute reprieve to the family of a severely ill baby boy.
Ten-month-old Charlie Gard was due to have his life support switched off at the end of the day Monday after his parents lost a Supreme Court appeal in the UK two weeks ago. A deadline had been set for June 13, at which time the court allowed a one-week extension for the judge’s to further consider the case.
After losing that appeal, Charlie’s parents, Chris Gard and Connie Yates, filed a request with the European court for an urgent interim measure that would allow judges time to consider the case.
The UK Supreme Court stepped in and extended the ruling until the end of the day July 10 to allow the human rights court an additional three weeks.
Until then, the UK should continue to provide Charlie with appropriate treatment and care “to ensure that he suffers the least distress and retains the greatest dignity, insofar as possible, with maintaining life,” according to a statement published by the court last week.
Charlie’s family responded to last week’s news on Twitter: “#FathersDay will be extra special this year as Chris will get to spend it with the apple of his eye Charlie!!”
Charlie’s rare condition
Charlie was born in August and suffers from mitochondrial DNA depletion syndrome, a rare genetic condition.
According to the UK Supreme Court decision delivered June 8, “his condition has deteriorated seriously since he was born. He cannot move his arms or legs or breathe unaided.”
His brain is also severely affected, and he is kept alive by a mechanical ventilator, according to the ruling.
Charlie’s parents have been fighting the UK and European courts for permission to take their son to the United States, where a doctor has agreed to carry out a experimental new treatment called nucleoside bypass therapy, which they believe is their son’s only hope.
If Charlie receives this treatment and it works, “it won’t be just Charlie’s life that has been saved, it will be many more children in the future, who are born with this horrible disease,” his parents wrote on their campaign website, Charlie’s Fight.
“We need to change things and show how determined parents can forge a path for other families encountering similar obstacles. We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives … hopefully starting with Charlie.”
Earlier ruling: Withdraw all treatment
But in April, London’s Great Ormond Street Hospital, where Charlie has been treated since his diagnosis, took the case to the High Court, arguing that it was in Charlie’s best interests for the therapy not to be given and for ventilation to be withdrawn instead.
Under UK law, most decisions about a child’s treatment are made by his or her parents in consultation with doctors.
But where there is serious disagreement, the parents or the doctors can to go to court and ask a judge to decide whether treatment should be given or withdrawn.
In this case, with “the heaviest of hearts, but with complete conviction for Charlie’s best interests,” the judge ruled that the hospital could withdraw all treatment except palliative care “to permit Charlie to die with dignity.”
Justice Francis stated that, although the US doctor in question was happy to treat Charlie, the therapy has never been used to treat this form of mitochondrial DNA depletion syndrome.
And according to the ruling, the doctor agreed that the therapy was unlikely to lead to any improvement in Charlie’s condition.
The judge acknowledged, however, that there is some recorded benefit of the therapy in patients with a different strain of the disease.
Charlie’s ‘chance of life’
Since the ruling in April, more than 110,000 people have signed a petition calling on the British prime minister to help release Charlie from the care of the Great Ormond Street Hospital. The prime minister would be unable to take any action, however, as members of Parliament cannot intervene in legal cases.
More than 80,000 people have also contributed to a crowdfunding campaign, with donations exceeding the £1.3 million ($1.65 million) required for the treatment.
Not all experts agreed with the April ruling. Writing in the medical journal the Lancet in May, bioethicist Julian Savulescu of the Oxford Uehiro Centre for Practical Ethics concluded that a different judge might have reached the opposite decision.
He argued that Charlie is not currently experiencing severe pain and that nucleoside treatment “offers a very small but non-zero chance of some improvement.” Since the funds for the therapy are also available, “we are left with no grounds for denying Charlie Gard his chance of life,” he wrote.
But on June 8, the UK Supreme Court rejected an appeal lodged by Gard and Yates, ruling that the therapy would be “futile.”
The next day — in response to a request filed by Charlie’s parents — the European Court of Human Rights ruled that the hospital should continue to provide life-saving treatment.
The ruling allowed time for the human rights court judges to examine the case but was only in place until the end of the day Monday.
The new ruling from the Supreme Court has now been extended until July 10.
