THE parents of a severely ill Wigan tot are threatening to take legal action to help keep her alive in case she takes a turn for the worse.
Shelley Beilby, and Robert Dainton, of Ince, are fighting doctors at Alder Hey Hospital over the possibility of withdrawing breathing support for daughter Amelia Rose, who has a very rare condition which affects brain development.
Currently the 23-month-old, more affectionately known as Mimi, is in the High Dependency Unit and has breathing support.
Following a meeting with the ethics committee, it was ruled that doctors may ignore their wishes to send her to intensive care if she was ever to contract pneumonia or suffer a seizure.
But her parents fear that if this extra medical care were not provided, the severity of the illness could end her life.
This is yet to be confirmed in writing, but Shelley and Robert are in further limbo after Amelia stopped breathing on Monday night and was sent to ICU, with extra breathing support.
Shelley, 29, who is constantly at Amelia Rose’s bedside, along with her partner Robert and other family members, 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.
“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.
“Mimi has fought so hard and bounced back so many times that if she has a sudden deterioration because of a treatable cause, we want the best for her and the chance to get back to how she is now. I’m beside myself with stress.
“We are fully aware she won’t have a long life but we want to support her own respiratory effort whilst she has it for as long as she’s comfortable.
“We don’t want to prolong Amelia’s life and cause unnecessary suffering to her. During a meeting two weeks ago, doctors said how stable she was, how she has coped on her oxygen mask, where every breath is her own, for seven months and not had repeated pneumonias,
“We asked them, in that case, to support her through an acute event like an infection or seizure whilst we treat it, with the knowledge that she would return to the condition she is in now and carry on enjoying the things she always has.
“Mimi has a good quality of life – she smiles at me, she makes noises in a communicative manner and she isn’t requiring regular pain medication apart from when she’s teething.
“We believe her quality of life would be massively improved if they provided her with portable oxygen – then at least she wasn’t confined to a room. We have been told ‘no’ for months.”
Amelia was born by emergency C section, and despite a relatively normal pregnancy, she was born with a catalogue of problems.
Her symptoms include lissencephaly, (smooth brain) of her frontal lobes, which causes problems with the airways, and patchy white matter throughout her brain.
A spokesman for Alder Hey Hospital was unable to comment on individual cases, but as yet, nothing has been confirmed to the family in writing.
To follow Amelia Rose’s progress, visit www.facebook.com/AmeliaRoseTheStorySoFar.
Her family is fund-raising to pay for sensory equipment and other essentials. To make a donation e-mail firstname.lastname@example.org