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.
The parents of an immobile 5-year-old girl who has grown up in Starship hospital's intensive care unit say they believe health officials are lining them up for a court battle to take away control of their daughter's care.
They say it is approaching a crunch point with a fresh impasse over the best way to care for their daughter, Ana-Carolina de Moraes Lobo Bircham.
Ana-Carolina has the active and inquiring mind of any school age child but is almost completely incapable of moving.
It has robbed her of the ability to breathe, move or speak. She communicates by blinking or through limited use of an eye-controlled computer.
Best medical practice, health officials and her parents Peter Bircham and Elane de Moraes Lobo all agree the best place for Ana-Carolina is at home.
Finding the best way for that to happen has proved difficult amid souring relations after her parents were given the option to turn off Ana-Carolina's life support when she was 15 months old.
The family believe a court battle may come after a discussions over how Ana-Carolina was to leave hospital.
A dispute had arisen over Ana-Carolina moving from Starship hospital to the Wilson Centre, a nursing-led rehabilitation and respite facility on Auckland's North Shore catering to children with serious health needs.
Peter Bircham and Elane de Moraes Lobo with their daughter Ana-Carolina at her fifth birthday. Photo / Sally Ahern
The health board had worked on a plan to move Ana-Carolina into the respite unit, designed to offer parents breaks from care with short stays.
In contrast, Ana-Carolina's parents want her to move into the rehabilitation unit.
Bircham said Auckland District Health Board chairman Pat Snedden had laid out the option of respite without offering any alternative.
"It was either agree to what (the health board) is suggesting with respite care or the answer will come from the courts."
Bircham said the respite option was unsuitable for a range of practical reasons but also because it suggested the health board held out no hope for any improvement.
De Moraes Lobo said she was left with the impression the health board would be taking the couple to court.
"It was 'this is enough. You guys are being obstinate'."
Among the practical reasons was the reduction in contact with their daughter, which would be gradual initially before settling around 12 hours a day.
Her parents have not worked since Ana-Carolina became ill and alternate shifts at the hospital to maintain an almost constant presence at her bedside.
"I think it's cruel," said Bircham. "We've been there all her life. She communicates through us. All we wanted was to live together as a family."
It is rare but not unknown for health boards to take court action against parents of children who have objected to clinical decisions.
A spokeswoman for the health board would not answer any questions about proposed court action.
Ana-Carolina has grown up in Starship hospital. Photo / Supplied
She said the plan for Ana-Carolina to stay in the respite area of the Wilson Centre was "a very reasonable option" endorsed by an expert panel appointed to oversee the case.
The plan would have allowed a parent to stay overnight for the first six weeks, she said.
"Starship Hospital and Auckland DHB team continue to work tirelessly to provide a high standard of care for Ana-Carolina and we remain focused on her best interests."
Epsom MP David Seymour, who has been closely involved in the case, said the health board should have got Ana-Carolina's care sorted sooner.
He said he was present at the meeting at which Snedden presented the parents with a "my way or the highway" solution.
Seymour said Snedden noted "normally these differences would be resolved in court".
Snedden did not respond to an interview request.
Seymour said there was a powerful human reason for resolving the issue and a financial reason, with enormous resources consumed keeping Ana-Carolina in PICU when she should be at home.
