Source:
https://scmp.com/news/world/europe/article/2104367/sad-conclusion-british-judge-rules-baby-charlie-gard-end-his-short
World/ Europe

A sad conclusion: British judge rules baby Charlie Gard to end his short life in hospice, not home

The parents and the hospital that has been treating him have been given until noon on Thursday to come to terms on an end-of-life care plan

Charlie Gard is due to turn one year old next week. Photo: AP

Critically ill baby Charlie Gard will be transferred to a hospice and taken off life support unless his parents and a hospital agree on a plan that could potentially keep the child alive for a bit longer, a judge ruled.

British High Court judge Nicholas Francis on Wednesday gave 11-month-old Charlie’s parents and the hospital that has been treating him until noon on Thursday to come to terms on an end-of-life care plan for the infant’s final hours or days.

The baby suffers from a rare genetic disease, mitochondrial depletion syndrome, which has caused brain damage and left him unable to breathe unaided. ­Recent tests found Charlie has irreversible muscular damage.

What if it was your child? I hope you are happy with yourselves Connie Yates

“It is in Charlie’s best interests to be moved to a hospice and for him at that point to be moved to a palliative care regime only,” the judge said as a medical and legal battle that has drawn international attention nears conclusion.

The parents, Connie Yates and Chris Gard, spent months trying to persuade Great Ormond Street Hospital to let Charlie go to the United States for experimental treatment. They gave up their fight on Monday, acknowledging that the window of opportunity to help him had closed.

On Tuesday, they said they hoped to bring their son, who will turn one next week, home to die. Francis said Charlie’s mother and father now accept that the only options for their son “are the hospital or the hospice”.

Thursday’s deadline was meant to yield a plan for what happens after the baby is transferred to a hospice. The parents want him kept on his ventilator for a time. The hospital, in fighting the parents’ effort to secure experimental treatment, had indicated that it was responsible for sparing Charlie unnecessary pain.

Francis said if the parties do not reach an agreement, Charlie will be taken to hospice and the ventilation system keeping him alive will be turned off. He issued an order barring publication of the name of the hospice and the date when Charlie is taken there.

The judge said it was a “very, very sad conclusion”.

Charlie’s mother left the courtroom in distress before the judge gave his ruling.

“What if it was your child?” Yates said, crying. “I hope you are happy with yourselves.”

Yates has requested a medical team of her choosing that would help keep her son alive for a week at the hospice. He is not expected to survive more than a few hours after the ventilator is removed.

The request indicated that the parents had backed away from their earlier expressed wish to take Charlie home for “a few days of tranquillity” before his ventilator is disconnected.

Great Ormond Street Hospital said it was not practical to provide life-support treatment for days at the couple’s home. Nurses from the hospital nonetheless have volunteered to care for him in his final hours.