The heart breaking story of 11-month- old Charlie Gard, which has made headlines around the world, is soon to end as doctors have confirmed nothing more can be done for the child.
Born in August 2016 a “healthy” baby, Charlie was diagnosed with the rate infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS), the legal battle around an experimental treatment has now ended with parents Chris Gard and Connie Yates withdrawing their case.
But why was there a legal battle in the first place? Charlie’s parents wanted to take him to the US where specialists had offered an experimental therapy called nucleoside, but doctors at the Great Ormond Street Hospital in London disagreed with the American approach, arguing that the treatment – which was not curative – would not improve Charlie’s quality of life. When British parents do not agree about a child’s future treatment, it is standard legal practice to ask the courts to make a decision. The British doctors said the experimental therapies were “unjustified”.
After a number of appeals, Charlie’s case was heard in the Supreme Court, where the child’s parents lost the battle. Their lawyers wrote to the European Court of Human Rights, but the courts refused to intervene. Charlie’s parents returned to the High Courts to request a fresh analysis of the case. They were given less than 48 hours to prove an experimental treatment worked. On 24 July, Charlie’s parents withdrew their request to change the original court order. As such, the child will have his life support switched off in coming days.
The debate, however, continues, with legal minds questioning whether the judicial system interfered with parents’ exercise of parental rights when the proposed American therapy would not have caused the infant significant harm. Great Ormond Street Hospital argued that there was in fact potential harm as the experimental treatment would have left Charlie in a “state of existence”, something of no benefit to Charlie. This, they said, was “inhumane” as nobody knew if the child was in pain. Charlie could not see, hear, move or make a noise.
Parents Connie Yates and Chris Gard thanked the international community – including Donald Trump and Pope Francis. The international attention had kept hope alive, they said. Their withdrawal of the legal battles was, however, recognition that treatment was now too late.
Greg Burke, director of the Vatican press office, said in a statement that Pope Francis, who had taken a personal interest in the case, “is praying for Charlie and his parents and feels especially close to them at this time of immense suffering.” The Bishops’s Conference of England and Wales expressed their “deepest sympathy and compassion” for Charlie and his parents.
Meanwhile, the British-based Anscombe Bioethics Centre, a bioethical institute of the Catholic Church said it was now time “to remember the preciousness of the child at the heart of this case, and to allow his parents to be with him until he passes from this life”.
“If further treatment may no longer be worthwhile, Charlie's life is inherently worthwhile, having the dignity and irreplaceability of every human life, and this will remain so even in the coming days,” a statement said. His parents said that if Charlie had been given the treatment sooner, he would have had the potential to be a “normal, healthy little boy”.
“We have always believed that Charlie deserved a chance at life.” SA