Four year old Ana_Carolina is trapped in her motionless body. Starship has recommended she die a natural death but her parents are fighting for her to return home and live a life under their care.
For almost four years Ana-Carolina has been trapped in her body. Now she's taking her first steps into the world.
This last week, the 4-year-old girl has for the first time consciously chosen to make something happen and then made it happen herself.
For someone with almost total body paralysis who needs a ventilator to breathe, it's a remarkable step into the world taken through software that reads the movement of her eyes and turns it into actions.
At five months of age, the connection that allows nerves to instruct muscles began failing until all that was left was the ability to twitch her fingers, blink her eyelids and move her eyes.
Paralysed Ana-Carolina, aged 4, getting ready to face the world in a new virtual way, which could lead to greater things such as one day driving a wheelchair. Photo / Supplied
Each of those tiny movements has allowed Ana-Carolina to communicate with the world, although in an extremely limited way.
Now, parents Peter Bircham and Elane de Moraes Lobo have watched over their daughter through three sessions with the Eyegaze system, which monitors eye movement and turns it into action.
"The autonomy this can bring is going to be astounding," says Bircham.
The girl has been the focus of much media attention since the Weekend Herald revealed the relationship breakdown between her parents and the Auckland District Health Board.
She has spent much of her life in Starship Hospital in Auckland, growing up in the Paediatric Intensive Care Unit there.
Ana-Carolina, aged 4, in Starship Hospital with parents Elane de Moraes Lobo and Peter Bircham. Photo / Supplied
Bircham and de Moraes Lobo say they want Ana-Carolina to move home - as does the hospital.
But each side has opposing views which has stalled the process and left Ana-Carolina stuck in hospital. It's a stand-off with real consequences beyond providing Ana-Carolina with a limited, medical place to live.
Her almost four-year occupation of a bed in the Starship Hospital's Paediatric Intensive Care Unit has meant around 70 other children have been unable to take it. The roughly $1.6m cost of her care is also about five times what it would cost were she living at home, freeing up money for other patients.
Heading home is a long way from the clinical advice to her parents when Ana-Carolina was 15 months.
At that time, not knowing what had caused her situation and believing there was no cure, the intensive care medical team advised Bircham and de Moraes Lobo to switch off their daughter's ventilator and allow "natural death".
Bircham said the eye-tracking software was introduced about a fortnight ago. A device with cameras atop an iPad monitors her eye movements, which moves a cursor on the screen.
"It can tell when you're staring at something on the screen. She stares at it for about three seconds and then it activates."
The introduction to the software was around a farmyard game, which had a barn door behind which were a series of animals.
"She stares at a barn door and the door opens and there's an animal behind it. She states at a window and the window opens."
Before the software, they had used a series of cards to interact with Ana-Carolina but there had been difficulties in working out which way she was looking.
There had also been a proximity switch which detected thumb twitches to turn on lights or blow bubbles - an interaction but one which was strictly binary.
The eye-tracking software allowed true choice and massively increased autonomy.
He said there were also discussions underway about upgrading Ana-Carolina's wheelchair to a motorised version which - it was hoped - she would eventually be able to control using the eye-tracking software.
"Once she gets the hang of it, she will be able to use that to drive a wheelchair."
Bircham said the software and prospect of a motorised wheelchair were recent developments, although he and de Moraes Lobo believed they should have been made available earlier.
A Starship spokeswoman said it passed on interest in the technology to the suppliers. She did not make any comment around how quickly ADHB had done so in this case.
