The parents of a four-year-old who has been in Auckland's Starship Hospital most of her life are demanding that she be able to go home.
Auckland's Starship Hospital Photo: RNZ / Cole Eastham-Farrelly
Ana-Carolina was born a healthy baby girl but fell ill at five months, and cannot move or breathe without help.
She has a very rare condition: a chronic form of Guillain-Barré syndrome and a genetic condition.
She has been living at the Paediatric Intensive Care unit (PICU), with her parents often by her side.
"We firmly believe the best place for her is to live at home with her family as is done elsewhere round the world," her father, Peter Bircham, told Morning Report.
"There's no reason. She's been stable now for three years, her health has remained steady."
"Everybody wins if she is. It'd cost a fraction of what the DHB says it costs to keep her in hospital. It's better for the patient, it's better for the family and frees up a bed in Starship Hospital."
Mr Bircham said he and his wife have given up work to care for their daughter, and have nearly lost all contact with friends and family.
"Essentially we are in prison. We've been there for 1265 days and there's not a single day off," Mr Bircham said.
"Most of our social contact comes with nurses that help and care for our daughter every day."
Mr Bircham said the health system had ignored the family's wishes.
He said they were under considerable pressure in 2014 to let Ana-Carolina die, and the district health board threatened to take them to court and let a judge decide.
He said the DHB backed away eventually.
"Children in similar conditions around the world go to school. Ana-Carolina has just started using eye gaze technology. They mentioned she'd be able to control her own motorised wheelchair by using her eyes and moving things on the screen.
"The people who are making the decisions about her long-term future are the people who decided she'd be better off dead."
Parents feel excluded from plan
The Auckland DHB declined to be interviewed, saying privacy obligations mean it could not publicly discuss Ana-Carolina's needs or treatment.
But it said in a statement that it had been working towards getting Ana-Carolina to her own home since she was 18 months old, and was very hopeful that they would be able to facilitate it.
That included setting up an expert panel - former Children's Commissioner Russell Wills, former Ombudsman and Health and Disability Commissioner Ron Paterson, and paediatrician Yohan Morreau - to review the plans being developed to transition Ana-Carolina out of PICU.
But Mr Bircham said he had no faith in the DHB.
"One of the reasons there is no trust is because we are excluded," Mr Bircham said.
"Supposedly it's a collaborative plan, but we haven't been involved to date."
Complaints have been laid with the Health and Disability Commission and the Human Rights Commission.
ACT MP David Seymour has taken up the case and is supporting the family.
