Charlie Gard: ‘Last precious moments’ for parents with their son

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(BBC) Charlie Gard’s parents are spending their “last precious moments” with their terminally ill son after ending their legal fight to take him to the US for treatment.

Chris Gard and Connie Yates want to spend the “maximum amount of time they have left with Charlie”.

The couple ended the case after a US doctor told them it was now too late to treat Charlie’s rare genetic condition.

Lawyers for the couple are due back in court on Tuesday afternoon.

Charlie has been in intensive care at Great Ormond Street Hospital since October (PA/BBC photo)

Great Ormond Street Hospital (GOSH) has not said when life support will end.

However, Mr Gard and Ms Yates, from Bedfont, west London, said Charlie would not reach his first birthday on 4 August.

In its statement to the High Court, the hospital said it was “increasingly surprised and disappointed” the US doctor, Professor Michio Hirano, “had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition”.

GOSH said Professor Hirano had not taken the opportunity to see Charlie until last week, despite being offered the chance to do so by the hospital in January.

Even though the professor gave written evidence at all the court cases, the hospital said it only emerged last week that he had not read the judge’s ruling following the first High Court hearing in April.

The hospital added it was concerned to hear the professor state in the witness box at the High Court hearing on 13 July that he had a financial interest in some of the treatment he proposed prescribing for Charlie.

‘Sorry we couldn’t save you’

Charlie has encephalomyopathic mitochondrial DNA depletion syndrome. He has brain damage and cannot move his arms or legs.

His parents had asked Mr Justice Francis to rule that their son should be allowed to undergo a trial of nucleoside therapy in New York, a move opposed by London’s Great Ormond Street Hospital, which argued it would be “futile”.

The Family Division of the High Court heard on Monday that US neurologist Dr Michio Hirano was no longer willing to offer the experimental therapy after he had seen the results of a new MRI scan last week.

Speaking outside court, Mr Gard said: “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.

“Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you.”

Mr Justice Francis said he hoped lessons could be learned from the “tragic” case.

He has suggested that parents and hospital bosses who disagree over life-or-death treatment for children should be forced to mediate in a bid to avoid litigation.

“I recognise, of course, that negotiating issues such as the life or death of a child seems impossible and often will be,” he said.

“However, it is my clear view that mediation should be attempted in all cases such as this one, even if all that it does is achieve a greater understanding by the parties of each other’s positions.”

Mr Gard’s and Ms Yates’s five-month legal battle started after doctors at Great Ormond Street had said the therapy would not help and that life-support treatment should stop.

They subsequently failed to overturn rulings in the High Court, Court of Appeal and Supreme Court in London, and also failed to persuade judges at the European Court of Human Rights to intervene.

The couple made the “most painful of decisions” on Monday after reviewing new scan results which showed Charlie had deteriorated to the “point of no return”.

In a statement, Great Ormond Street said: “The agony, desolation and bravery of their decision command GOSH’s utmost respect and humble all who work there.”

Mr Gard and Ms Yates hope to establish a foundation to ensure Charlie’s voice “continues to be heard”.

They had raised more than £1.3m for the treatment in the US.

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