Will he now be allowed to go back home to die?
HIS parents’ final wish that he be allowed home to die was still not settled last night.
Charlie Gard will not survive until his first birthday next week. But his parents long to take him home for a bath and to put him to bed in his cot, before saying goodbye.
However it was unclear last night whether Great Ormond Street will block their wish.
Charlie’s lungs are too weak to function without the help of an artificial ventilator, which he is hooked up to in the paediatric intensive care unit of the London hospital.
A mobile ventilator unit would be needed along with a team of medics. His parents have offered to pay for this privately.
The court heard that Chris Gard and Connie Yates were still in discussion about the arrangements with the hospital and the talks could continue today. If they cannot agree, Mr Justice Francis could be asked to make a ruling on the matter.
Miss Yates told the court: ‘We are now going to spend our last precious moments with our son Charlie, who unfortunately won’t make his first birthday in just under two weeks’ time.’
The question of when and where Charlie’s breathing ventilator is withdrawn is likely to be the subject of the intense discussions.
Charlie was due to die in Great Ormond Street on June 30 but this was postponed after his parents accused doctors of blocking their final wish to let him pass away at home. They issued a tearful video message in which Miss Yates, 31, said: ‘We promised our little boy every single day that we would take him home.’
Mr Gard, 32, added: ‘ We want to give him a bath at home, put him in a cot which he has never slept in.’
He said Great Ormond Street had refused to let them do so, adding: ‘ Our parental rights have been stripped away. We can’t even take our own son home to die.
‘We’ve been denied that. Our final wish, if it all went against us, was to take our little boy home to die, and we are not allowed.’
The couple said they had been discussing end- of-life palliative care options since last November when Charlie first went into hospital. They had always wanted him to die at home if all else failed, they said.
Miss Yates added: ‘One option was to let Charlie go home to die. We chose to take Charlie home to die. That is our last wish.’
The couple have hardly been at their flat in Bedfont, south-west London, since Charlie’s illness told hold. They have mounted a vigil by his bedside night and day for month after month.
Charlie was born on August 4, 2016, a healthy 8lb 3oz. Aged just six weeks, he delighted them with his first smile but a fortnight later, he began to lose weight and strength.
He was admitted to hospital in October last year and transferred to Great Ormond Street where tests revealed he had mitochondrial depletion syndrome. His strain of the disease was so rare he is believed to have been only the 16th sufferer in the world.
His parents both unwittingly carry a faulty gene – meaning in theory they are at risk of the same thing happening in future.
‘We promised him every day’