Two Syrian refugees are trying to persuade a High Court judge that their seriously ill six-year-old daughter should continue receiving life-support treatment.
Specialists have told Mr Justice Hayden that the little girl is suffering from a rare and incurable neurological condition, and dying.
They say she should be disconnected from a ventilator and moved to a palliative care regime.
Her parents disagree and say ventilation should continue. They want to care for her at home, using a portable ventilator.
The girl is in the care of the Birmingham Women’s and Children’s NHS Foundation Trust.
We have now come to a stage where the trust no longer thinks that it is in (the girl’s) best interests to continue giving her invasive ventilatory support— Nageena Khalique QC
The trust has asked Mr Justice Hayden to decide what moves are in her best interests.
The judge on Tuesday began considering evidence at a trial in the Family Division of the High Court in London.
He ruled that nothing could be reported which would identify the girl – her parents do not want her to be named in media reports.
Mr Justice Hayden heard how the girl had been born in Lebanon, after her parents left Syria.
She had started to become ill about four years ago, after arriving in England.
Nageena Khalique QC, who led the trust’s legal team, gave Mr Justice Hayden detail of her condition, and said it was irreversible and progressive.
The condition meant that the girl could no longer walk, sit or stand, said Miss Khalique, and she had spent two-thirds of this year on a ventilator in an intensive care unit.
They submit that long-term, at-home ventilation should be attempted, or the current pattern of treatment should continue— Barrister Ian Brownhill
“This is a very cruel condition,” Miss Khalique told the judge.
“We have now come to a stage where the trust no longer thinks that it is in (the girl’s) best interests to continue giving her invasive ventilatory support.”
She added: “There is no cure.”
Miss Khalique went on: “The family are strongly advocating for long-term ventilation, via a portable ventilator, at home.”
Barrister Ian Brownhill, who is leading the girl’s parents’ legal team, said the couple accepted that their daughter would not recover, but he said they did not agree that a “ceiling of care” should be imposed.
“Instead, they submit that long-term, at-home ventilation should be attempted, or the current pattern of treatment should continue,” he said, in a written case outline.
“(They) feel confident that they would be able to sustain (her) at home, with periodic hospital admissions, whilst the long-term ventilation is established.
“Following this course would enable (her) to enjoy the non-medical benefit of being at home with her parents … and wider family.”
In July, Mr Justice Hayden ruled that doctors could stop providing life support treatment to a 12-year-old boy who suffered brain damage in an incident at home in Southend, Essex, in April.
Archie Battersbee died earlier this month after his parents failed in bids to overturn Mr Justice Hayden’s ruling.
Mr Brownhill told Mr Justice Hayden that the girl’s case was factually different from Archie’s case.
The trial is due to end on Wednesday.
