Ana-Carolina with parents Peter Bircham and Elane de Moraes Lobo at Starship hospital. Photo / supplied
Ana-Carolina with parents Peter Bircham and Elane de Moraes Lobo at Starship hospital. Photo / supplied
The little girl trapped inside her body and trapped inside Starship children's hospital is celebrating turning 5. But Ana-Carolina's birthday brings no new hope of escape.
The intractable conflict between her parents and the Auckland District Health Board over the best option for her care means Ana-Carolina remains in Starship's paediatric intensive care unit, as she has since the age of 5 months.
The best practice advice is that Ana-Carolina should be at home - she cannot move but is healthy and bright, needing a ventilator to breathe that works as well in hospital as it does anywhere else.
Epsom MP and supporter David Seymour with Ana-Carolina. Photo / Supplied
But there is another constant - local Epsom MP David Seymour has emerged as a persistent advocate on the family's behalf.
He intervened with former health minister Jonathan Coleman which led to former health board chairman Lester Levy creating a special panel to mediate a way for Ana-Carolina to leave.
Former health and disability commissioner Professor Ron Patterson headed the panel which struggled to resolve the impasse between parents and physicians.
That was a year ago. Coleman is gone, Levy has left and Patterson left the panel to run the new Government's inquiry into mental health.
And Ana-Carolina stays.
In the 30 months since Seymour became involved, he has written dozens of letters, met with the parents for hundreds of hours and - every now and again - simply sits with Ana-Carolina at Starship.
"It's difficult to understand the actions of the ADHB," he says, during a break in tango practice. The Act leader and sole MP is one of a string of well-known faces currently competing in Dancing With The Stars.
"I'm genuinely at a loss to understand why the ADHB administration is acting the way it is."
The issue is - and isn't - simple. When Ana-Carolina was 15 months, her parents were told that it was in the girl's best interest to "allow natural death".
The discussion created a schism between the parents and the hospital, destroying the trust Bircham and de Moraes Lobo had in the hospital.
For their part, they wanted Ana-Carolina out of the hospital and at their home. The hospital says it also wants this - but there is much disagreement over the level of care neeeded and who provides it.
Seymour says ADHB's inability to get Ana-Carolina out of an intensive care bed - which has been needed for other patients for years - is an "extraordinary failure".
Ana-Carolina turns 5 this weekend. She has lived in Starship's paediatric intensive care unit since she was 5 months old. Photo / Supplied
Since Seymour became involved, he says he's been urged by others in politics to step back from supporting the family because of the demands and time involved.
"On one hand, I'm frustrated we haven't got a result and got her home. On the other hand, I'm proud I've stuck with it.
"You roll as the local MP as the last line of defence. But also, there is something extraordinary happening there. Her transformation from when I first met her from being completely lifeless to having movement in her fingers and eyes - it is possible she regains a lot more movement."
Bircham and de Moraes Lobo are overjoyed with the change in their daughter - her eye movement now allows her to direct a computer through which she can communicate.
"She understands a lot more than we ever realised," Bircham says. Along with fingers and eyes, there is toe and eyebrow movement, and speech therapy.
De Moraes Lobo says: "David has been a wonderful person. He has always been there for us."
Seymour admits being initially confounded by the overwhelming nature of Ana-Carolina's condition, the cause of which is still ill-defined.
But he has come to realise she is "a completely normal 5-year-old". "There's a person in there and she's fighting to get out."
An ADHB spokeswoman said: "PICU and the wider Starship and DHB teams wish Ana-Carolina a very happy 5th birthday."
She said the hospital would not discuss her case publicly but continued working to get her home.
Health minister David Clark said anyone aware of Ana-Carolina's situation hoped she would be able to go home soon although it would be improper for him to intervene.
"I hope Ana-Carolina has a happy fifth birthday. I have a great deal of sympathy for Ana-Carolina's parents and understand why they have battled so hard for the best outcome for their daughter."
