Parents of baby with irreversible brain damage launch final bid to fly him to US for treatment
2 May 2017
The parents of Charlie Gard, the eight-month-old baby suffering from a rare incurable condition, have instructed Brick Court Chambers public law silk Richard Gordon QC, along with junior Andrew McIntyre, to lodge an appeal against an order authorising doctors to withdraw treatment.
Connie Yates and Chris Gard were hoping to take Charlie, who has been on artificial ventilation at Great Ormond Street Hospital, to the US for treatment that has been described as ‘pioneering’.
Last month, the High Court said in Great Ormond Street Hospital for Children v Gard that it would be in the baby’s best interests for life support to be stopped and for palliative care to be provided instead, so he could be allowed to die peacefully and with dignity.
Yates and Gard were initially represented by Bindmans, who acted pro bono in the case after the couple were told they weren’t entitled to legal aid. Mr Justice Francis said he had found this situation ‘remarkable’.
Yates and Gard, the judge said, had been represented by ‘experienced and dedicated solicitors and counsel who have acted pro bono and I wish publicly to pay tribute to them for their excellent assistance to the court and, I am sure, to their clients.’
The parents have now instructed North London firm Harris da Silva as their solicitors in the appeal.
Explaining his decision, Francis J said the case ‘has never been about affordability, but about whether there is anything to be done for Charlie’.
At one point, Great Ormond Street doctors decided to apply for ethical permission to attempt nucleoside therapy, a treatment which offered potential hope for improvement but that hasn’t been used on patients with this form of mitochondrial disorder.
By the time that decision had been made, however, Charlie’s condition had greatly worsened and the view was that his epileptic encephalopathy was such that his brain damage was severe and irreversible.
In his condition, the judge said, treatment was potentially painful but incapable of achieving anything positive for him.
The US doctor who had offered to treat Charlie was due to provide evidence. After a conversation with the Great Ormond Street consultant, however, he said: ‘I can understand the opinions that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely.’
He also confirmed that he had never treated with nucleoside therapy anyone who had encephalopathy and was therefore unable to say whether a patient with encephalopathy would respond positively.
He nevertheless said if Charlie were in the US, he would treat him if the parents so wished and could afford it.
Francis J concluded ‘with the heaviest of hearts, but with complete conviction’ that subjecting Charlie to nucleoside therapy was unknown territory – it had not even been tested on mouse models – and that he should accede to the hospital’s request to withdraw treatment.
But the judge appeared to leave open the faint possibility of allowing Charlie to be flown out to the US, saying it would be ‘problematic, but possible’. For now, however, his decision remains that this would not be in Charlie’s interest unless there was a prospect of improvement for him.
‘[I]f 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 said.
This story was first published on Solicitors Journal on 2 May 2017 and is reproduced by kind permission