Daughter of Syrian refugees at centre of life-support treatment battle

Parents want her to stay on a ventilator but medics want her to receive palliative care

Specialists have said that the girl is suffering from a rare, incurable neurological condition. AFP

The Syrian refugee parents of a desperately ill six-year-old girl and her doctors are fighting over her care in a British court.

The girl, whose identity has not been made public, has a rare and incurable neurological condition, specialists have told the High Court in London.

Medics argue she should be moved off a ventilator and on to a palliative care regime. The girl’s parents want her to stay on the ventilator.

Mr Justice Hayden heard that the girl had been born in Lebanon after her parents left Syria, and that she first became being ill about four years ago after arriving in England.

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.

“[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.”

Hospital bosses have asked Mr Justice Hayden to decide what is in her best interests.

The judge on Tuesday began considering evidence at a hearing in the Family Division of the High Court.

He ruled that nothing could be reported which would identify the girl, who is in the care of the Birmingham Women's and Children's NHS Foundation Trust. Her parents had said they did not want her to be named in media reports.

'There is no cure'

Nageena Khalique QC, who led the trust's legal team, gave Mr Justice Hayden details of her condition and said it was irreversible, progressive and incurable.

The condition meant that the girl could no longer walk, sit or stand, and has spent two thirds of the year on a ventilator in an intensive care unit, Ms Khalique said.

“This is a very cruel condition,” Ms 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. There is no cure.”

In July, Mr Justice Hayden ruled that doctors could stop providing life support treatment to a 12-year-old boy who had suffered brain damage in an incident at home in Southend, Essex, in April.

Archie Battersbee died earlier this month after his parents failed in their bid to overturn Mr Justice Hayden's ruling.

Mr Brownhill told Mr Justice Hayden that her case was factually different from Archie's case.

The hearing is expected to end on Wednesday.