ADS
The parents of a severely ill baby girl are threatening to take legal action after an ethics committee ruled that doctors can withdraw her breathing support - a move they fear will end her life.
Amelia was diagnosed with PCH1B - an rare neurodegenerative disorder - in December last year.Her mother and father were told that only a 'handful' of cases have ever been diagnosed worldwide and, with no known cure for the condition, Amelia was given just 12 months to live.
In March this year, medical staff, with the support of Amelia's parents, drew up an end of life care plan, which stated that Amelia would not be transferred to ICU if she suffered a seizure or became more ill.
Shelley Bielby and her partner are threatening to take legal action after an ethics committee ruled that doctors can withdraw their daughter Amelia Rose's breathing support - a move they fear will end her life
It was agreed that she would not receive breathing support if she contracted a cold or picked up a hospital bug - a decision which her parents are fighting to change.
Amelia's mother Shelley Beilby said: 'Because Amelia's condition is terminal and she was expected to deteriorate rapidly, we didn't want her to suffer and so we agreed to it.
'But she is doing so well and we are all surprised at how stable she is.
'Based on what the doctors told us, we didn't think she'd be here now but she is.
'She's progressing, she knows who we are and she smiles and we think it's unfair to stick to the life plan when you look at how far she's come.
'I think the ethical committee sees breathing support or treatment in ICU as prolonging death not encouraging life.
'The hospital staff are concerned about us too because we have been living in the hospital and haven't even been home since September.
'They said that it's a burden for us and it's too much for anybody to bear but that's not the case.
'We just want what's best for Amelia and, after seeing how well she's doing, I'm no longer comfortable with the end of life care plan.
'If she catches even just a cold it could affect her breathing and if she doesn't get the support she needs that could be it.
'To lose her to something as small as that after everything she's been through isn't right.
'I feel sick with worry every time she gets a sniffle.
'There's so many bugs in hospital she could easily pick something up.
'We want to give her a fighting chance and that's why we are doing everything in our power to get the life plan changed.'
The 23-month-old suffers from a rare condition which means she requires constant breathing assistance
According to the plan, if Amelia's condition deteriorates, she will not receive breathing support and will only be treated with antibiotics.
After demanding a review of the plan, the ethical committee held a meeting two weeks ago to discuss whether changes should be made if Amelia takes a turn for the worse.Shelley and her partner Robert, 34, a groundworker, said they will find out the final ruling on Monday but said the committee recommended at the time that the plan stays in place.
Shelley said: 'We are waiting to hear for certain on Monday but we are ready to fight this in the courts if we need to.
'I don't want to think about fighting people during what could be the last few months of Amelia's life.
'I don't want to think about fighting people during what could be the last few months of Amelia's life. I'm really upset because I don't want to remember her last months like this'
- Shelley Beilby, Amelia's mother
'I'm really upset because I don't want to remember her last months like this.
'I want to enjoy my time with Amelia while we've got it.'
A spokesman from Alder Hey Children's NHS Foundation Trust, told the Mail Online: 'As a specialist children’s hospital, Alder Hey treats many children with complex, life threatening illnesses.
'Sadly, despite receiving the very best expertise and care, some children are unable to recover from their illness or condition.
'In such a situation, medical professionals will meet to discuss the most appropriate care plan going forward, focusing on the comfort and wellbeing of the child concerned.
'For every child this is discussed in full with the family before an agreement is reached about the most appropriate ongoing care needed for that child.
'If an agreement between clinicians and parents cannot be reached, the case is taken before a High Court to enable a judge to decide.
The ruling is yet to be confirmed in writing, but Miss Beilby and Mr Dainton are in further limbo after Amelia stopped breathing on Monday night and was sent to Intensive Care, with extra breathing support.
Her parents Shelley Beilby, 29, and partner Robert Dainton (pictured with Amelia) are threatening legal action as they believe, while Amelia, affectionately known as Mimi, is seriously ill, she still has quality of life
Miss Beilby said: 'Amelia stopped breathing and her main consultant was called in from home and we talked.
'We both agreed that if Amelia didn’t start breathing properly on her own she would go to ICU.
'This goes against what they had decided previously.
'As it stands, the life plan is being adjusted to say that depending on the situation and cause, ICU isn't completely ruled out.
'It’s more of a compromise. But the ethics committee ruling still stands and we are due to look over their decision in writing on Monday.
'Sadly, despite receiving the very best expertise and care, some children are unable to recover from their illness or condition'
- Spokesman for Alder Hey Hospital
'The feeling is that the team is divided in their opinions as to what’s best and not just disagreeing with me.
'I’m confused because what happened last night is what I asked them to do in the first place.
'But I’m happier with the plan as it is now because I know they will consider upping her support in situations like that.
'I have no idea what’s going to happen still but we are still talking with the medics and I’m currently still only receiving legal advice over the phone.'
A hospital spokeswoman added: 'The trust is unable to comment on individual cases.
'We understand that this is an ongoing, highly sensitive case and we continue to liaise closely with the family concerned.'
Share or comment on this article
ADS
No comments:
Post a Comment