Syrian refugee couple ask High Court judge for permission to take their girl, six, home from hospital to be put on a long-term ventilator as she battles incurable condition
- Specialists said that the girl, 6, is dying from an incurable neurological condition
- She is in the care of Birmingham Women’s and Children’s NHS Foundation Trust
- The parents, who left Syria eight years ago, have asked the judge for his ‘mercy’
Two Syrian refugees are scheduled to find out today whether their daughter who is suffering from a ‘very cruel condition’ is allowed to remain on life support.
Mr Justice Hayden is expected to deliver his ruling today after hearing on Monday that the six-year-old girl is dying from a rare and incurable neurological condition, and should be moved to a palliative care regime.
The condition has meant that the girl could no longer walk, sit or stand, and she had spent two-thirds of this year on a ventilator in an intensive care unit.
Her parents, who fled Syria eight years ago and claimed political asylum in Britain, have asked the judge for ‘mercy’ and want her to receive ‘long-term ventilation’ at home using a portable ventilator.
Mr Justice Hayden (pictured) is scheduled to deliver his ruling today on whether continued invasive ventilation is in the best interests of the six-year-old girl
Nageena Khalique QC, who is leading the trust’s legal team, has given Mr Justice Hayden details of her condition and said it is irreversible and progressive.
Miss Khalique said: ‘This is a very cruel condition.
‘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.’
Mr Justice Hayden on Monday finished hearing evidence at a trial in the Family Division of the High Court in London and is scheduled to deliver a ruling today.
The girl started to become ill after arriving in England four years ago, and is in the care of the Birmingham Women’s and Children’s NHS Foundation Trust.
The court ruled that nothing could be reported which would identify the girl, and 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.
The court heard that the girl’s condition has meant that she can no longer walk, sit or stand, and she had spent two-thirds of this year on a ventilator in an intensive care unit
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.
He told the judge, in a written case outline: ‘Instead, they submit that long-term, at-home ventilation should be attempted, or the current pattern of treatment should continue.’
Mr Justice Hayden has heard how the girl has spells when she is not on a ventilator.
During those ‘respite’ periods, she is constantly supplied with oxygen to help her breathe.
The girl’s father told the judge that he understood the doctors’ point of view but he said 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.
He said: ‘We have suffered our entire life since we were born, in Syria, in Lebanon.
The Trust has argued that the young girl’s ‘very cruel’ condition is irreversible and progressive, and specialists believe that invasive ventilation is no longer in the child’s best interests
‘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, adding ‘I am asking you for your mercy’.
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