Parents of a baby boy with a mystery brain condition have said they are in a ‘living nightmare’ as they battle to keep their son alive.
Alder Hey Children’s Hospital in Liverpool has said doctors have exhausted all options in trying to treat Alfie Evans, and have applied to the High Court to switch off his life support.
The case has drawn comparisons to Charlie Gard, whose parents took Great Ormond Street Hospital to court in a bid to take their son abroad for treatment.
Tens of thousands of people have formed ‘Alfie’s Army’, donating money to help Alfie’s parents Thomas Evans and Kate James, both 20.
After months of searching, they have found an Italian children’s hospital willing to take Alfie, but Alder Hey is opposing the move.
In a letter seen by the Liverpool Echo, the hospital asked the High Court to rule that withdrawal of intensive care is in Alfie’s best interests.
Mr Evans, from Bootle, said: ‘It’s devastating – we feel so disappointed. I feel Alfie is being ignored, let down and not given a chance.
‘Why should we take him to a hospice when there’s a hospital happy to take him? Alder Hey were watching us work so hard to get this hospital – now we’ve got an offer and a doctor willing to come over, but they’ve refused to speak with him.
‘Now we are starting to go through a living nightmare. They are making it 10 times worse.’
Alder Hey Children’s NHS Foundation Trust said: ‘We understand that this is an incredibly difficult time for the family concerned and we continue to liaise directly with them.
‘We are unable to comment on individual cases. Alder Hey is a specialist children’s hospital which, therefore, means we treat many children with often complex, life-threatening con-ditions. Unfortunately, despite the best efforts of our clinicians, some of these children are sadly unable to recover from their illness.
‘In such a situation, medical professionals will meet to discuss the most appropriate care plan going forward, focusing on the comfort, wellbeing and best interests of the child concerned.
‘The trust will often seek advice from specialist clinicians at other trusts. The care plan is always discussed in full with the family to aim to reach agreement between clinicians and parents about the most appropriate care.
‘Understandably, these cases place families under great pressure. We will always seek to reach agreement with parents of the child concerned, but there will be some rare situations where agreement cannot be reached and the treating team believe that continued active treatment is not in a child’s best interests.
‘In these cases, the trust will refer a case to the Family Division of the High Court and seek a determination as to the best interests of the child.’
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