Parents of 5yo battling mystery illness fear Auckland DHB will take legal action against them

Parents of a five-year-old girl who has spent almost her entire life in side Starship's Intensive Care Unit (ICU) are worried the Auckland DHB will take court action against them over the future of her care.

When Ana-Carolina was a toddler, doctors told them to turn off life support over her mystery illness, but the parents refused.

Now doctors want her to go to a respite facility - and the parents are saying no again. 

The little girl can think like a five-year-old, she just can't move like one. Ana-Carolina's father says that since she was a baby, each day of her life - all 1869 days - has been spent growing up in Starship's ICU.

"It's Christmas number six in hospital, and what we wanted this year is to have a Christmas together," Ana-Carolina's mother Elaine de Moraes Lobo explained.

A mother's wish for her daughter to finally leave Starship hospital - however, Auckland DHB want to move her to a respite facility on the North Shore.

There, for 12 hours each day, her parents can't visit - a world their little girl won't know, as her mum and dad stay by her side all hours of the day.

"I just think that would be traumatic - you'd never be able to communicate to her why mum and dad have been taken away, and we think that's just cruel," says father Peter Bircham.

Auckland DHB says the proposal was "a very reasonable option which was endorsed by the independent expert panel".

"They continue to work tirelessly to provide a high standard of care for Ana-Carolina and ... remain focused on her best interests," it says.

They won't say why she can't go in to the North Shore's facility's rehabilitation centre, which has 24-hour access.

"They've said to us she doesn't meet the criteria, but every expert we've spoken to - including those at the Wilson Centre - say that she meets every criteria," Mr Bircham says.

Nurses that worked at the centre say she deserves better.

"I think it's a great place, having worked there - it's a great place to be. I can't come to terms with the fact they're going to deny the family 24-hour access," Jan Moss said.

A five-year-old that fought the odds to stay live is now fighting for a home with her parents.

This year she'll spend Christmas inside Starship Hospital; her parents are hoping it's her last while they wait for a new home.


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