The parents of terminally-ill Alta Fixsler face a fresh battle with a Manchester hospital trust over their wish for her to die at home.
The Manchester Evening News reported last week how her parents Chaya and Abraham, an Orthodox Jewish couple, have rented a flat in Salford which they believe is suitable for their two-year-old daughter to spend her final hours.
The couple have exhausted all legal options in trying to prevent Manchester University NHS Foundation Trust (MFT) from withdrawing life-sustaining care.
READ MORE: 'Why can't our child die at home?'
Alta suffered severe brain damage after being born prematurely at 34 weeks in December 2019 and has never left hospital.
The Fixslers, who have joint US-Israeli citizenship, wanted to fly her out of the UK to try offers of alternative treatment.
However, doctors at MFT say Alta is able to feel pain and it would not be in her 'best interests' to allow her to travel abroad.
High Court judge Mr Justice MacDonald ruled in favour of the Trust in May.
The Fixslers cannot accept that Alta should be allowed to die - but their final wish is that she should be able to do so at home with her family where they will feel 'comfortable'.
They say it is also important so that they are able to observe certain Jewish customs.
The High Court ruling stated it could be possible for Alta to go home if there was agreement with the Trust.
But now Alta's medical team have written to the High Court to make clear they believe that the withdrawal of mechanical ventilation should take place either in the hospital's Intensive Care Unit or Derian House, a hospice in Chorley, Lancashire.
A report from a specialist paediatric doctor concluded that the Fixslers' flat is 'inaccessible' to the particular type of trolley that Alta requires to be transported.
The High Court application also states that the Trust believes the couple would be unable to meet Alta's palliative care needs.
The skills required include 'management of Alta’s tracheostomy, safe oxygen administration, feed administration and medication management,' the application says.
"This adds a considerable burden to parents and these factors explain why withdrawal of mechanical ventilation at home is so rarely undertaken; only once or twice each year," the application states.
The parents have argued that they have had tracheotomy training and that they only require a 'fresher course' to be able to look after Alta.
They also supplied video evidence from Hatzola, the community ambulance service, showing that a bariatric stretcher was able to enter the property without issue.
However, the Trust's application states: "Hatzola does not have experience in transporting critically ill, mechanically ventilated children and are not familiar with a PCC transport trolley and the equipment associated with it, which includes a mechanical ventilator, monitors, infusion pumps and other equipment.
"Hatzola do not have the experience or knowledge necessary to make a valid accessibility assessment of the family home in Alta’s case."
The Trust also refutes any suggestion that doctors are under 'pressure' to withdraw Alta's care and highlights the difficulties staff have faced dealing with a case that has attracted international attention.
The Fixslers' cause has attracted support from high-profile figures including US Senator Chuck Schumer and the former President of Israel, Reuven Rivlin.
"All clinical and nursing staff have been nothing but respectful to the parents and their wishes since the order of MacDonald J," the application states.
"Since then, as it has throughout, it has been extremely difficult for staff who have continued to provide care to Alta knowing the court’s findings.
"They have done so with great professionalism and dedication, despite the frequently inaccurate and sometimes offensive and hateful comments made about the team in the international and national online media."
The Trust's application also makes mention of the current strain on NHS resources.
Alta's doctor said that during conversations with Salford's community nursing team at the start of August, it had been made clear that 'staff availability would be a problem over several periods in the next few weeks because of annual leave'.
And in arguing in favour of Alta being allowed to die in the hospice Derian House, they say this would represent 'a more appropriate use of healthcare resources overall and would allow us to admit another critically ill child to PICU at a time of considerable national pressure on PCC [Paediatric Critical Care] beds.'
Reacting to the Trust's application, the Fixslers told the MEN: "We are heartbroken that the NHS Trust is rushing to euthanise our beautiful daughter, without consent, against our wishes and our beliefs, and without listening to us.
"We have spent over two years getting to know our daughter and now the NHS Trust insists on rushing to end her life. Why are they in such a rush?"
"We have not been allowed to seek a second opinion on her condition – this should be a basic right for any patient, but especially in this case which is now a matter of life or death.
"We have not been listened to."
The MEN approached the Trust for further comment on the High Court application.
A spokesperson said: “We recognise that this is an incredibly difficult and distressing time for Alta’s family and we will continue to support them.
"Due to patient confidentiality, and ongoing legal proceedings, we are unable to comment further.”
