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'It's a horrific environment' - Parents of young girl who’s spent nearly her entire life in Starship now begging DHB to release her

May 9, 2018

Ana Carolina has spent almost her entire life living at Starship Hospital.

Peter Bircham and Elane de Moraes Lobo have over the last five years given up their jobs and sold their home to support their daughter's care.

Little Ana Carolina has spent almost her entire life living at Starship's PICU - that's the Paediatric Intensive Care Unit. 

Her parent's biggest battle? Trying to get her home, and it's a hard task when their finances are exhausted.

Ana Carolina was admitted to Starship Hospital in 2013, and she's been there ever since.

"We there for how many days now? 1,650 something?" her parents Peter and Elane muse.

Ana Carolina's mum and dad realised something wasn't right when she was just four and a half months old.

"We noticed her arms and legs started moving a little bit less. One clue was and she was babbling - but moving her mouth and no sound was coming out," Mr Bircham says.

An MRI revealed Guillian-Barre syndrome, which has left her paralysed and unable to breath on her own.

"So there's nothing wrong with her brain, no, nothing at all. It's perfectly functional. It's just her muscles," her dad says.

TVNZ1's Seven Sharp first met Ana-Carolina in 2016 at another birthday.

She celebrated turning three on the rooftop of Auckland's museum. Her first trip outside hospital grounds.

But two years later, she's still here.

"According to hospital's own numbers it costs 1.8 million dollars a year to keep her in PICU," Mr Bircham says.

"The most expensive place in the entire country is where she's trapped."

Peter and Elene have long campaigned to bring their daughter home.

They say an in-house hospital-grade care system would save the DHB around 80 per cent, and get their cognitively-able child out of an incredibly stressful environment.

"It's a horrific environment, you see kids dying all the time, machines, choppers, lights, don't know day or night because it's always the same," Mr Bircham says.

And Ana-Carolina's stay is reaching breaking point.

"It's affected our health, we don't eat properly, don't sleep, don't go anywhere, we have no social life, we have lost our friends," Mr Bircham says.

"It's been a huge financial cost, Elene has not worked for six years, me for three, continually borrowed against our mortgage, working on a plan to get her home.

"Every dollar we've spent has gone nowhere."

Frustrated at the lack of progress, they're now begging the DHB to release her to The Wilson Home - a charitable trust supporting children with disabilities.

They say to keep her in ICU any longer is unimaginably cruel.

"Lately she cries every time she goes back to PICU because she realises there is a world outside," her mum Elene says.

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