UK parents Chris Gard and Connie Yates refuse to give up on their 10-month-old son Charlie. This week, they’re taking their next step in the battle to keep him alive.
Charlie has a rare genetic condition called mitochondrial depletion syndrome. He can’t breathe on his own, and he can’t move his arms or legs. His heart, liver and kidneys are affected. He is deaf, and suffers severe epilepsy. He has experienced significant, irreversible brain damage.
Gard and Yates have raised more than $2 million to take their baby to the US for treatment. But in April, a High Court judge ruled Charlie’s life support should be turned off.
Last month, three Court of Appeal judges upheld that ruling.
Tomorrow, Gard and Yates will appear at a preliminary hearing of the Supreme Court. They’re hoping to prove they have an arguable case to overturn the ruling and take Charlie to the US.
However, the three Court of Appeal judges want their side of the story to be heard too. They have released their 17,000 word ruling, which details why they believe it’s time to let Charlie die.
A lot of it comes down to this treatment in the US. It has often been described in the media as “pioneering”, but the truth is nucleoside therapy has never been tried on someone with Charlie’s form of the condition, RRM2B.
A consultant in paediatric metabolic medicine, identified only as Professor A, gave evidence.
“She pointed out, as I have already recorded in this judgment, that this treatment has never been tried on humans or even on animals, not even mice which have this condition, namely RRM2B,” the ruling reads.
“She pointed out that there is no evidence in humans that the drugs could cross the blood/brain barrier.”
Despite that, specialists at Great Ormond Street Hospital were, initially, thinking it might be worth giving nucleoside therapy a try. This all changed in January, after Charlie suffered a series of seizures that caused brain damage.
“At a meeting on 13 January, Charlie’s treating clinicians informed his parents that as a result of this further decline in Charlie’s condition, all of the treating clinicians now agreed that nucleoside treatment would be futile and would only prolong Charlie’s suffering.”
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The one person who has been giving Charlie’s parents hope is a professor of neurology at a medical centre in the US. Identified only as Dr I, he’s the one who has been offering to try nucleoside therapy on Charlie. But even he didn’t sound too positive when giving evidence.
“Crucially, Dr I said that, having seen the 30 March EEG, the damage to Charlie’s brain was more severe than he had thought. He said that he thought Charlie was in the terminal stage of his illness. He said he thought that the treatment, if administered, was unlikely to be of any benefit to Charlie’s brain. He described the probability as low, but not zero. He agreed that there could be ‘no reversal of the structure of Charlie’s brain’.”
Professor A said she believed Charlie was experiencing pain.
“Professor A expressed the important need to weigh up the potential benefit of the smallest of chances (her view being that there were no chances) against the continued pain of intensive care, ventilator support and so forth.
“She said that she did not regard his pain of being of a low level of suffering, but something more significant.”
In his judgement, Lord Justice McFarlane wrote that many cases involving children with these tragic conditions never come to court, because the family and the hospital agree on a way forward.
“But it is well recognised parents in the appalling position that these and other parents can find themselves may lose their objectivity and be willing to ‘try anything’, even if, when viewed objectively, their preferred option is not in a child's best interests,” he added.
“It must follow from that unanimous professional and expert evidence, that to move Charlie to America and expose him to treatment over there would be likely to expose him to continued pain, suffering and distress.”
He admitted it was a “devastating outcome” for the parents.
“They have gone more than the extra mile in trying to hold on to the hope that they have for their child.”
Should parents have the ultimate say in the health and welfare of their child?