A last-minute hearing is to be held over whether Archie Battersbee’s life-support treatment just hours before it was due to be withdrawn.
The 12-year-old, who has brain damage, has been at the centre of a legal battle which has resulted in doctors being given permission to stop treatment.
The boy’s mother, Hollie Dance, said she has been “very anxious” all weekend as the family await the latest decision on Monday.
The Court of Appeal granted a virtual hearing on Monday after the government asked it to “urgently consider” a request from the United Nations to continue his treatment so it could examine his case.
It started just hours before Archie was initially due to have his life support turned off from 2pm. The court heard the hospital would not take any action before a ruling was passed.
Barts Health NHS Trust, which runs the hospital, wrote to the family over the weekend to inform them they intended to end treatment on Monday afternoon.
Ms Dance said she had been given a letter with the “choreographed execution” of Archie and “just left to deal with our own feelings”.
“There was no meeting, sat down and broken to gently,” she told Sky News on Monday morning.
”It’s just caused so much stress. This could have been totally prevented and handled totally different to how it’s been handled.
“We shouldn’t have been dragged through the courts.”
She also said the last couple of months had been “an emotional rollercoaster” and stress levels had been “through the roof”.
Archie was left brain-damaged after an incident at home in April, which his mother believes may have been linked to an online challenge.
He has not regained consciousness since.
Ms Dance said the family felt “relieved” that the government had taken the UN’s intervention seriously.
“The anxiety of being told that Archie’s life-support will be removed at 2pm tomorrow has been horrific,” Ms Dance said on Sunday.
“We are already broken and the not knowing what was going to happen next is excruciating.”
Alistair Chesser, chief medical officer for Barts Health NHS Trust, said the plan to withdraw medical treatment will proceed unless the court directs otherwise on Monday.
He said: “Our deepest sympathies are with Archie’s family at this difficult time. We understand a court hearing will take place on Monday morning and we await the outcome.
“The plan to withdraw treatment will proceed unless the court directs otherwise.”
The trust previously said in a letter to Ms Dance and Paul Battersbee, who are separated but both live in Southend, Essex, that the withdrawal process will aim to “preserve Archie’s dignity”.
The trust said in the letter: “We understand that any discussions around the withdrawal of Archie’s treatment are very difficult and painful.
“However, we want to ensure that you and your family are involved as much as you wish to be.”
“You or any of the family may wish to lie on Archie’s bed with him or have him in your arms, if that should be practically possible,” it added.
Ms Dance said this would amount to “extraordinary cruelty” and a “flagrant breach of Archie’s rights as a disabled person”.
She said: “Archie is entitled to have the decisions about his life and death, taken by the NHS and UK courts, to be scrutinised by an international human rights body.
“Hastening his death to prevent that would be completely unacceptable.”
A spokesman for the Department of Health and Social Care said: “We recognise this is an exceptionally difficult time for Archie Battersbee’s family and our thoughts are with them.
“The government asked the High Court to urgently consider the request from the UN Committee on the Rights of Persons with Disabilities.”
