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 a 4-year-old, who can neither breathe without help nor move, and the hospital system that cares for her, are at odds about the way forward, writes David Fisher.
From her bed in Starship hospital, Ana-Carolina sees little but hears much.
At the age of 4, her world is limited and her brain is trapped by her body. She cannot move and her lungs work only with the help of a mechanical pump.
At most, she can move her eyelids, has minimal facial expression and sometimes can twitch her fingers.
Since she was 5 months old, Ana-Carolina has lived in the Paediatric Intensive Care Unit of Starship hospital in Auckland.
She has always shared a room, not with a brother or sister, but with three others who come and go. Some get well and leave. Others die; possibly as many as 50 of those who have shared a room with Ana-Carolina never left hospital alive.
Her's is a room without windows to the world. In 2014, when she was 15 months old and it was clear she would never get better, Starship doctors told her parents it was their unanimous professional opinion that care should focus on "comfort measures and allowing natural death".
But Peter Bircham and Elane de Moraes Lobo wanted more than death for their daughter. They want to bring her home to live with them, but have been frustrated by an apparent missing link in New Zealand healthcare. There is no adequate framework -- financial or medical -- for that to happen.
The parents, however, are not blameless. The hospital also says Ana-Carolina should be at home but argues the parents themselves have put up roadblocks in a long-running feud.
It is a fraught situation pitting the processes and bureaucracy of a multimillion-dollar system at war with the emotions of loving parents.
And that has left a little girl in limbo.
Ana-Carolina arrived an apparently healthy baby girl in 2013, but at five months old she fell ill.
"One day," says Bircham, "she was starting to gurgle and make noises and be quite unresponsive.
"Two days later her mouth was moving but she couldn't make any noise, and her movement slowed."
The prognosis was grim. Starship doctors explained Ana-Carolina had a genetic condition and would not live past the age of 2.
Peter Bircham and his daughter. Photo / Supplied
"That was an intense shock. We were there three days and then they sent us home," says Bircham.
"It was horrifying," says de Moraes Lobo. "We prayed for hope, or something, to keep us going, that by two years there would be something there for us."
A few days passed then Ana-Carolina really began to struggle. She was turning blue for lack of air and they raced to Starship feeling as if time was slipping away.
There were tests, and an MRI that detected inflammation where the spine meets the brain. Spinal muscular atrophy was a possibility. Guillain-Barre syndrome - in which the immune system attacks the nerves - was in the mix.
No one actually knows with any more certainty now than they did then what has attacked Ana-Carolina's body.
On October 19, 2013, she went in the Paediatric Intensive Care Unit and that's when time stopped.
"We've been there since then," says de Moraes Lobo.
There were months of searching for a reason; blood tests, genetic tests, spinal fluid tests and scan after scan after scan.
Ana-Carolina's first birthday came and went without change. By then, already, her stay in the paediatric intensive care unit (PICU) was outside normal bounds. It is a place where most children come and go, one way or another, inside three months.
In August 2014, when Ana-Carolina was 15 months old, the Starship clinicians met to discuss the path forward.
Minutes of the meeting show 11 clinicians gathered -- intensive-care specialists, paediatric neurologists -- but for all that combined medical experience and learning, they had no hope to offer Ana-Carolina's parents.
It was important, they agreed, that Bircham and de Moraes Lobo were told "the high likelihood is that there is no treatment that will be of benefit".
"Many parents in similar situations have decided that the child has suffered enough and move care towards comfort measures rather than continuing with unproved treatments such as this," the minutes read.
Bath time for Ana-Carolina, three months before she became ill. Photo / Supplied
"It is the unanimous professional opinion of the medical team that Ana-Carolina's care should now focus on comfort measures and allowing natural death."
Guidance would be sought from the clinical ethical committee and Auckland District Health Board's legal team on how that would be managed.
A few days later, the parents were called to a meeting with doctors.
De Moraes Lobo says the meeting was one of the worst moments of her life.
"All these doctors signed off that the best course of action was to switch off Ana-Carolina's ventilator and let her die.
"We pretty much cry for a while because the people who are supposed to support Ana-Carolina ... this was just a few months after her 1-year birthday, and she looks beautiful and she looks .. she was just a normal child."
No diagnosis, no treatment and yet, say her parents, what of hope?
"There is so much we could explore for her," says de Moraes Lobo. "Technology advances every day in medications and treatments. So the expectation was they would support her until something comes along or wait for her to get better."
The minutes of that meeting state that further meetings were needed to work out "equipment and personnel required to provide 24-hour home ventilation".
"As New Zealand has no home ventilation infrastructure, however, she is currently being managed in hospital whereas in other countries she would be being managed at home."
The hospital's ethics committee chairwoman Karen Smith wrote that Ana-Carolina needed advanced life support to stay alive.
"This level of care is not able to be provided outside PICU so she is likely to stay there for the duration of her life should there be no improvement in her clinical condition."
Bircham and de Moraes Lobo complained to the health board, saying they felt ambushed and that the hospital was giving up.
At 6 months, after Ana-Carolina's breathing tube was fitted. Photo / Supplied
Chief medical officer Dr Margaret Wilsher replied, saying Starship's clinicians were obliged to offer options.
"We discussed that many families think that it is preferable to stop active and invasive treatments, which invariably involves some level of pain and distress, when there is almost no prospect of recovery, and move care to a comfort phase.
"We also discussed that the majority of adults who are paralysed and unable to breathe or move in any functional way would prefer to die and choose to do so."
She acknowledged Bircham and de Moraes Lobo's view that Ana-Carolina was "in no distress and is happy, smiling and interactive" but it was "very difficult to determine just how much distress she is in".
"A great conundrum here is that we are unable to ask her for her feelings.
"No one can determine Ana-Carolina's current quality of life, or whether she would choose to live if given the choice."
In 2008 - five years before Ana Carolina was born - a Starship hospital paediatrician was one of 10 doctors who designed a "consensus statement" by the Thoracic Society of Australia and New Zealand on how to design a system to allow children reliant on ventilators to live at home.
The consensus statement said there were increasing numbers of children who lived on ventilators and that they should be allowed to do so at home.
"Long-term hospitalisation is inappropriate for the developing child. Care of children requiring long-term ventilatory support is feasible and should occur out of hospital.
"Dedicated government funding is needed for children who require long-term respiratory support in the home."
Ana-Carolina's parent have figures showing the cost of keeping a child in PICU is about $1.6 million a year.
Care at home would cost about $300,000, although the cost varies, with the health board talking about employing health care assistants to help Bircham and de Moraes Lobo care for their daughter.
When the 2008 statement was written, there were five children in New Zealand receiving what is called "invasive ventilatory support" at home.
That's the same mechanism by which Ana-Carolina is kept alive -- a tube in the throat connected to a machine which pumps air into and out of the lungs. In Australia, however, the numbers were much higher.
Party time. Photo / Supplied
A survey of hospitals found they had 46 children living at home on ventilators. By population, that was almost double the number of children in New Zealand - 1.2 per 100,000 in Australia against 0.5 per 100,000 in New Zealand.
Without a home ventilation option, Bircham says: "My guess is most people in that situation are encouraged - as we are - to allow their children to die. We were put under considerable pressure for a long period of time."
Ana-Carolina didn't get better. She didn't get worse. She didn't go home.
She got older and now, here she is, wearing Kitty Cat shoes that have never been walked in, all silvery-sparkled with green and red lights that would flash were they to be stomped on the ground.
Ana-Carolina is wheeled from PICU to the room where we meet at Ronald McDonald House, Birch and de Moraes Lobo fretting and organising her space while two nurses tag along behind.
Outside is a media minder from Auckland District Health Board's communication department.
There has been some sensitivity in organising this meeting.
In the three years since the 2014 meeting that suggested a "natural death", the relationship between the health board and Ana-Carolina's parents has become toxic.
There are bundles of complaints from her parents about the way Ana-Carolina is being treated, criticisms over efforts by clinicians to find an answer to their daughter's condition, accusations of staff behaviour, of a failure of policy, of poor management of PICU, of poor medical care.
Ana-Carolina's care should now focus on comfort measures and allowing natural death.
And through it all, a constant complaint that not enough has been done to get Ana-Carolina home.
The hospital has its own complaints about the couple's behaviour, but they reject them.
The loss of faith is complete -- the pair have made multiple complaints to the Health and Disability Commission and, most recently, to the Human Rights Commission.
None have yet succeeded, although the hospital has, on occasion, offered apologies for errors and lost tempers.
Epsom MP David Seymour has worked to support the family for the past 18 months. There is conflict, he says, and "like most stories there is fault on both sides".
But Seymour says anyone considering that needs to look at the two parties trapped in the ongoing disputes.
On one side, there is a health board that is a professional body equipped to deal with difficult situations through processes and systems.
On the other, Ana-Carolina's parents "had their daughter and they realised it wasn't going to be as they'd hoped" and "that's put them under a lot of pressure".
"The ADHB on the other hand has had several opportunities to present a plan that is functional and builds trust and actually get the girl home. Now it's going to take probably a year under any circumstance to plan it. They should have started this two years ago."
Ana-Carolina's 4th birthday party. Photo / Michael Craig
Wilsher told the Weekend Herald that the hospital agreed the best place for Ana-Carolina was at home, and said its staff had worked hard since August 2014 to discharge her there.
"We are very hopeful that we will be able to facilitate this little girl moving home with her parents," she said.
ADHB says it does have a home ventilation system, despite documentation saying it does not.
"The evidence is the 180 children who are on it, including nine who require it for life support.
"Three of those need it constantly, like Ana-Carolina. But beyond a broad framework, it is difficult to develop a system for those extreme-needs cases. It appears at that end, there is no programme, as such.
Wilsher is adamant there is no link to "natural death" conversations, which are a painful necessity in Starship and other hospitals.
The medical journal data wasn't of large enough numbers to be statistically significant, she said.
"There is no difference to the type of care offered In New Zealand compared to Australia, and no difference in the proportion of parents who choose natural death as far as we are aware.
"It would be wrong and irresponsible to suggest New Zealand families receive a lesser level of care."
Ana-carolina's pathway home has become lost amid the conflict.
In March this year, Starship shifted gear to try to find a solution.
She understands loving. She understands affection.
By this stage, chairman of the health board, Dr Lester Levy, was involved.
The first stage was an international review of medical practice to design "a model of care for a New Zealand child who is totally ventilator dependent and living at home".
It meant the creation of a framework into which Ana-Carolina would live outside PICU - the recommendation made in 2008.
Starship has appointed a panel to oversee what happens next -- former Children's Commissioner Dr Russell Wills, former Ombudsman and Health and Disability Commissioner Professor Ron Patterson and long-time paediatrician Dr Johan Morreau.
There is also a plan for a way forward prepared by Dr Karen Waters, head of the long-term ventilation unit at Sydney Children's Hospital.
She found that the family's Parnell home was unsuitable, that there was no suitable vehicle to transport Ana-Carolina and questioned whether "the home environment would be a safe work place for Ana-Carolina's carers".
There was also the international review of caring for children such as Ana-Carolina at home, which meant "the parents take ultimate responsibility for the care of their child".
There would be an overnight carer but "parents will be expected to spend time caring for the child by themselves".
Neither de Moraes Lobo nor Bircham had "completed training in medical skills that would allow them to be Ana-Carolina's primary carers" - a decision they say they took for fear the health board would use their new skills to avoid hiring qualified staff. There is also a dispute over the level of care Ana-Carolina should receive at home. Waters recommended finding "an alternative location for Ana-Carolina to live", which could include "long-term residence in respite facilities".
Peter Bircham, his daughter Ana-Carolina and partner Elane De Moraes Lobo at the Ronald McDonald House. Photo / Jason Oxenham
De Moraes Lobo and Bircham have been fighting, they believe, to bring Ana-Carolina home where she will be safe.
As it stands, it seems she will leave hospital but be no closer to home than before.
"I don't see her disability," says de Moraes Lobo. "I see the good things. She behaves like any other child. It's no different -- just the dynamics are different. My problem isn't my daughter's disability. My problem is this hospital. The question I want you to ask is why isn't Ana-Carolina home?"
And while Ana-Carolina can't speak, her parents maintain she can communicate.
There's the blinking, the impatient hiss around her trach tube when she wants attention.
"Ana-Carolina can't hug us with her arms," de Moraes Lobo says, but those finger twitches can be felt. She holds her daughter and arranges her arms as if she could and "she gives me a big hug in the way she can".
Bircham scoops Ana-Carolina from wheelchair to bed, holding her closely on the way for a little dance.
De Moraes Lobo: "It's hard seeing other children running but we just accept it. Ana-Carolina is just a blessing.
