Appeal for Terminally Ill Child to Receive Experimental US Surgery Rejected By European Court of Human Rights

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Wednesday 28th June 2017

The European Court of Human Rights have rejected a petition from the parents of a terminally ill child to overrule the High Court judgement refusing them the right to take their child to the US for experimental treatment for his rare brain disorder.

This is the final legal case in the story of Charlie Gard, a terminally ill child suffering from the rare brain and muscle degeneration condition known as mitochondrial depletion syndrome. He has spent most of his young life in the intensive care unit of Great Ormond Street Hospital, unable to move his limbs or breathe unaided.

Great Ormond Street Hospital staff in March had found that Charlie was not responding to treatment and advised the parents that the best thing for Charlie would be to only provide palliative care and reduce suffering rather than prolong life with the potential for causing suffering. Charlie’s parents, Chris Gard and Connie Yates, wanted to take their son to the United States in order to receive an experimental treatment unavailable in the UK.

There was a disagreement between his parents and the doctors, so the Great Ormond Street staff petitioned the Family Division of the High Court. The High Court, Mr Justice Frances presiding, were required to make a decision regarding whether continuing life-preserving treatment would be in Charlie’s best interests or whether the focus on treatment should be to allow Charlie to die with dignity and without prolonging suffering and pain.

This case concluded in April, with Mr Justice Frances making the decision that doctors would be allowed to cease providing life-prolonging treatment. Charlie’s parents appealed, an appeal that was dismissed in May. A further plea to the UK Supreme Court earlier this month was also rejected, both on the same grounds of best interest.

Eight days ago, a plea was submitted to the European Court of Human Rights, which was Charlie’s parents’ last legal recourse to allow their child to travel to receive this treatment. While the European Court deliberated it was ordered that Charlie’s life support would remain until they decide whether they will intervene in the case.

Yesterday, the European Court reached the decision that Charlie was likely “exposed” to pain, suffering and distress, and sending him to receive futile experimental treatment with no hope of success would not be of benefit.

The immediate future for Charlie would not change, and Great Ormond Street have said they are not going to rush to take action or change how Charlie is treated without a period of discussion and transition. The money raised by Charlie’s parents to take him to America and pay for the procedure, which reached as high as £1.3 million will be donated to a mitochondrial depletion syndrome charity, to allow other children the chance at survival.

It is the absolute end of an emotional case, but ultimately the High Court verdict, agreed by the Court of Appeal, Supreme Court and European Court of Human Rights was ultimately the correct one. Charlie’s health had deteriorated and brain damage had increased to the point that any care would only bring prolonged pain without the change of improved quality of life.