Syrian refugees await UK High Court decision on daughter's life support

Parents of girl, 6, want her to receive 'long-term ventilation' at home

The High Court in London. AFP
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Two Syrian refugees have gone to the UK High Court asking for their seriously ill daughter to continue to receive life-support treatment.

The girl, 6, is dying from a rare and incurable neurological condition, specialists told Mr Justice Anthony Hayden.

They said she should be moved to palliative care.

Her parents, who left Syria eight years ago and claimed political asylum in Britain, disagree and want her to receive “long-term ventilation”.

They want to care for her at home, using a portable ventilator.

Mr Justice Hayden on Monday finished hearing evidence at a trial in the Family Division of the High Court in London.

Mr Hayden said he aimed to deliver a ruling this week.

The girl is in the care of the Birmingham Women’s and Children’s NHS Foundation Trust.

Trust bosses have asked Mr Hayden to decide what moves are in the girl’s best interests.

He ruled that nothing could be reported that would identify the girl because her parents do not want her name released to the media.

Mr Hayden has heard that the girl was 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 is leading the trust’s legal team, has given Mr Hayden details of the girl's condition, saying it is irreversible and progressive.

It meant the girl could no longer walk, sit or stand, said Ms Khalique, and she had spent two thirds of this year on a ventilator in an intensive care unit.

“This is a very cruel condition,” the lawyer told the judge.

“We have now come to a stage where the trust no longer thinks that it is in her best interests to continue giving her invasive ventilatory support.

“There is no cure. The family are strongly advocating for long-term ventilation, via a portable ventilator, at home.”

Barrister Ian Brownhill, who is leading the parents’ legal team, said the couple accept their daughter will not recover but they do 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,” Mr Brownhill told the judge in a written case outline.

Mr Hayden was told the girl had spells when she was not on a ventilator.

During those “respite” periods, she is constantly supplied with oxygen to help her breathe, he heard.

Her father told the judge he understood the doctors’ point of view but his daughter would be “happier” at home on long-term ventilation.

He told the judge how he and the girl’s mother had left Syria in 2014 and lived in Lebanon before claiming political asylum in Britain.

“We have suffered our entire life since we were born,” he said. “In Syria, in Lebanon.”

“Here, we have received a lot of help."

He said he would “never return” to Syria because of the “regime”.

The girl’s mother told the judge that the youngster had a “smile on her face” when at home.

“I am asking you for your mercy,” she said.

Updated: August 22, 2022, 9:17 PM