13:57, April 03 372 0 theguardian.com

2017-04-03 13:57:03
Baby at centre of life support case 'extremely unwell', court hears

A baby at the centre of a life support treatment dispute is “extremely unwell” and is likely to be feeling pain, a high court judge has been told.

Specialists at Great Ormond Street hospital in London think it is time to stop providing life support treatment to Charlie Gard, who is nearly eight months old.

Doctors say Charlie, who has a rare genetic condition, should move to a palliative care regime. His parents disagree.

Postman Chris Gard and Connie Yates, of Bedfont, west London, want to be allowed to take Charlie to a hospital in America where they hope he can be treated.

Mr Justice Francis is considering evidence at a hearing in the family division of the high court in London before deciding what option is in the child’s best interests.

A Great Ormond Street specialist told the judge on Monday that Charlie had no spontaneous movements and could not hear.

She said therapy being proposed by doctors in the US would “very sadly” not help the infant. “He is extremely unwell,” she said. “He is having procedures which would cause pain to other people.”

She said it was probable that Charlie was experiencing pain but was unable to let anyone know. The Great Ormond Street specialist said Charlie’s parents thought that he could make some movements.

But she said she and another specialist had reviewed him a few days ago and could see no spontaneous movements. She said Charlie had a very rare condition which had proved fatal in other cases.

Babies with the condition lived on average a few months without life support treatment, she said.

Francis has heard that Charlie, who was born on 4 August, has a form of mitochondrial disease – a condition which causes progressive muscle weakness. He had ruled that doctors involved in the little boy’s treatment could not be named. He also heard detailed medical evidence from a neurologist who would oversee any treatment Charlie had at a hospital in the US.

The neurologist said Charlie was in the “terminal stage” of his illness. But he suggested that treating Charlie would be compassionate. He proposed a therapy which he said would provide a small chance of a meaningful improvement in brain function.

“It may be a treatment but not a cure,” he said. “[Charlie] may be able to interact. To smile. To look at objects.”

The neurologist said he proposed trying the therapy for up to six months. A barrister representing Charlie’s parents told the judge that the child’s normal life did not cause him pain.

“There is no evidence that he is on a regular basis in pain,” said Sophia Roper. “His normal life does not cause him pain.”

Charlie’s parents launched an internet appeal on the GoFundMe website two months ago saying they needed to raise £1.2m to pay for treatment in the US.

Website data shows that the target has been passed and more than 80,000 people have pledged money. A GoFundMe spokesman said the “outpouring of support” had been “absolutely incredible”.

The couple stroked a cuddly toy monkey belonging to Charlie as they listened to proceedings on Monday.

“We just want to have our chance,”Yates told the BBC earlier this month. “It would never be a cure but it could help him live. If it saves him, amazing.”

“I want to save others. Even if Charlie doesn’t make it through this, I don’t ever want another mum and their child to go through this,” she said.

Mitochondrial depletion syndrome is thought to affect just 16 children worldwide. A spokesperson for Great Ormond Street hospital said earlier this month that it had exhausted all proven treatment options.