Judge says baby can ‘die with dignity’
Tears in the High Court as bench rules Charlie Gard’s life support can be turned off despite parents’ wishes
A DESPERATELY sick infant is to be kept on life support for three more weeks after a judge ruled that he should be allowed to die “with dignity”.
Charlie Gard’s treatment will continue after his parents, Chris Gard and Connie Yates, suggested they may lodge an appeal against yesterday’s landmark High Court ruling which would allow doctors to switch off the artificial ventilation machine that is keeping the eight-month-old alive.
Mr Justice Francis said it was in the best interests of the child, regardless of his parents’ wishes, for life support to be switched off. He said Charlie, who has mitochondrial depletion syndrome – an extremely rare and debilitating genetic disorder – should be allowed to die after experts agreed that his profound brain damage cannot be reversed.
The decision meant that, despite £1.2 million being raised in an online appeal, Charlie will not now travel to the United States for pioneering treatment. It sparked distressing scenes in the public gallery of Court 47, where there were sobs and cries from relatives. Mr Gard cried “No, no!”, then buried his head in his hands as relatives leant forward to comfort him.
One woman sobbed and repeatedly wiped away tears as the summary judgment was read out.
Mr Gard and Ms Yates later condemned the judge for refusing their son one last “chance of treatment”.
If they decide not to appeal in the next three weeks or any appeal is dismissed, then Great Ormond Street hospital (GOSH) can begin the process of withdrawing treatment.
In a statement, the parents said they were now facing “every parent’s worst nightmare” as they anticipated the day their son’s life support is turned off and he is allowed to slip away.
Their solicitor, Laura Hobey-Hamsher, said: “They want to look carefully at the reasons behind the court’s decision and are considering what they can do now ... they are struggling to understand why the court has not at least given Charlie the chance of treatment in America. The medical evidence is complex, and the treatment offered, potentially ground-breaking.”
Charlie was born with mitochondrial disorder, a genetic condition which saps the organs of energy and is so rare there are only a handful of diagnosed cases on the planet. He is in its last stages and has been left deaf and blind, but according to his doctors still able to feel pain. However, he can only breathe through a ventilator.
The judge, sitting in the Family Division of the High Court, said experts at GOSH and a team of doctors in Barcelona had agreed that Charlie’s damaged brain function “cannot be improved”. That was even the opinion of the US expert who Charlie’s parents hoped would treat him.
A US doctor said in evidence that he would be happy to treat Charlie with experimental nucleoside therapy and that the baby would have received the treatment if he lived in the US. But the doctor added: “I can understand the opinions that he is so severely affected by encephalopathy that any attempt at therapy would be futile.”
In his summary ruling, Mr Justice Francis said Charlie’s parents “acknowledged and accepted that the quality of life that Charlie has at present is not worth sustaining”. He concluded it was lawful and “in Charlie’s best interests” for staff at GOSH to withdraw artificial ventilation.
The judge said: “Subjecting him to nucleoside therapy is unknown territory, for it has never even been tested even on mouse models, but it may (or may not) subject the patient to pain, possibly even to mutations.
“If Charlie’s damaged brain function cannot be improved, as all agree, then how can he be any better off than he is now, which is a condition that his parents believe should not be sustained?”
He continued: “It is with the heaviest of hearts, but with complete conviction ... that I find it is in Charlie’s best interests that I accede to these applications that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”