Failure to provide reasonable care of a good standard has been admitted by the Southern District Health Board and its former audiologist, Simon Tregonning. But who is picking up the pieces? Bruce Munro talks to families living with the ongoing impacts of severe, late-diagnosed hearing loss.
Caleb is home for the holidays. That is him standing in the hallway of his family's Mosgiel home with his back to the lounge, trying to find something in the cupboard. He is dressed just in boxer shorts, oblivious to the chatter in the room a few short metres away.
Ten minutes later, he walks in smiling and dressed like a typical teenager. He plonks himself down on a sofa.
His mother, Ann Barr, makes the introductions.
Caleb smiles again and makes a noise.
''Caleb,'' Ms Barr says.
''He's saying he's Caleb.''
And that is the end of it. I do not know sign language. Caleb's severe, long-term hearing loss means he cannot hear and has not learned to speak more than a few muffled words. The gap is less than a metre, but fathomless.
''Things could have been so different,'' his mum, on the verge of tears, says. ''If he had been diagnosed earlier.''
It is like crawling into a rabbit hole which, the deeper one goes, the wider it grows.
In August, the Human Rights Review Tribunal released its decision that the Southern District Health Board (SDHB) and its former audiologist Simon Tregonning had failed to provide services with reasonable care and skill and had failed to provide services that complied with legal, professional and ethical standards.
The tribunal's decision followed a 2013 Health and Disability Commission finding that the health board's audiologist did not provide testing and diagnostic services with reasonable care and skill to a boy and a girl, both unnamed.
In the months before the commission report, the health board had found another six people with undiagnosed hearing loss who had previously been tested by Mr Tregonning. Those six were among 123 who had come forward after 1532 letters were sent to parents of children previously tested between 2007 and 2010.
Mr Tregonning was sole charge audiologist at Dunedin Hospital for about 20 years until his position was disestablished in 2010.
They may go a long way back, but the effects are still being felt today. And their multiple tendrils are reaching far into the future.
Caleb and his twin were born prematurely, at just 25 weeks. His brother died six weeks later. It is likely Caleb could hear when he was born. And highly likely his hearing was severely damaged by the potentially life-saving, but ear-toxic, antibiotics administered in the newborn intensive care unit.
He was seen repeatedly by Dunedin Hospital ear nose and throat staff. Appointments were often followed by a hearing test.
During the first four years of his life, Ms Barr estimates Caleb had at least a dozen hearing tests. He was given grommets and even hearing aids. But Ms Barr was convinced things still were not right.
''How did they not know he was deaf? Even if he had glue ear, he would still have had some speech,'' she says.
''I was saying, `This child's not talking. This child's not responding. I'm having to tap the floor to get his response.' I just felt no-one listened to you.
''In the end I did, I swore. I said, `For f***'s sake, look at his f***ing file.' I don't get how they didn't pick it up from the tests they were doing.''
The breakthrough came when Caleb's community health nurse contacted the Ministry of Education's Special Education (SE) unit, concerned about his slow development. The SE early intervention teacher called in a deaf adviser who observed Caleb and then insisted the hospital send him to Timaru for more hearing tests.
The tests showed he was profoundly deaf in both ears. He was almost 4 years old.
Caleb was given a cochlear implant in Christchurch. But by then he was squarely behind the eight ball. During the next few years his hearing loss affected his schooling and his behaviour. The effects of auditory isolation were exacerbated by unkindness.
''Eight-year-old kids saying, `Oh he's DC, the deaf [expletive]','' Graeme Ryder, Ms Barr's long-term partner, says, shaking his head.
''That was really hard - seeing your son think these people are his friends when you know they are not,'' Ms Barr says.
The decision was made last year for Caleb, angry and lagging far behind at school, to attend the residential Van Asch Deaf Education College, in Christchurch.
It has been good for him. But it is not home, his mother says.
''He misses his family quite a bit actually. It's been hard on us and his siblings. His sister has always stood by him and stuck up for him. So have his older brothers.''
It need not have been such a hard road, Mr Ryder says.
''If it was picked up much earlier that he was profoundly deaf, things could be way different for him now,'' he says.
''He just wants to be like everyone else,'' Ms Barr adds.
''It's quite sad when you see your child just wanting to be like his peers and you know he can't be.''
The future holds plenty of unknowns.
''It worries me, what it is going to be like for him for the rest of his life,'' Ms Barr says.
''Because society can be quite nasty.''
''Yes. How's he going to get a job?'' Mr Ryder asks.
Although Jayden Edwards is six years younger, his story has much in common with Caleb's. But it has two disturbing, family-related twists.
Jayden, now 9 years old, received a cochlear implant at Christchurch hospital when he was 3.
Prior to that, he had at least three hearing tests in Dunedin, his parents Lisa and Damian Edwards, of Brockville, Dunedin, say. A letter written by a Christchurch surgeon ahead of the implant surgery sums it up.
''His parents were suspicious about his hearing at the age of 8 months, but unfortunately he has been missed and late-diagnosed,'' the doctor wrote.
When the cochlear device was first turned on, Jayden, who had been living in a silent world all his life, screamed.
He has resisted entering the strange world of sound, and is only now beginning to use the inbuilt hearing aid, encouraged by friends with their own implants.
''That's six years,'' Mr Edwards says.
''But if he'd been done at birth he wouldn't have known any different. He would be talking if he'd got the diagnosis earlier.''
His parents' suspicions were aroused by the striking similarity between Jayden's behaviours and those of his deaf aunt, Mr Edwards' sister, when she was a young girl - an aunt who had been misdiagnosed by Mr Tregonning in the mid-1990s.
In her case, her hearing loss was not addressed until her school principal, who had previously taught at a school for the deaf, insisted something was amiss. For Jayden's family, the many hospital appointments, including several in Christchurch, exacted a financial toll. Dealing with Jayden's schooling and social needs has also been ''a massive stress on the family'', Mrs Edwards says.
But perhaps the biggest price has been paid by Jayden's younger sister.
''It's taken a huge toll, which we are just finding out now, in our youngest daughter, '' Mrs Edwards says.
''She's developed a few of his habits, of what he does being deaf,'' Mr Edwards explains.
''She's coming on now, but her speech is definitely behind.''
''Simon [Tregonning] has apparently moved on. But it's much harder for the rest of us,'' Mrs Edwards says.
Mr Tregonning, who is now a high school maths teacher, refused to comment when contacted last month by the Otago Daily Times.
He had earlier told Fairfax old equipment and a lack of supervision were to blame for the failure in diagnoses. He said he had written apologising to the boy who was the subject of the tribunal hearing and to his family, and regretted what happened.
''But I can't do anything about it. I've moved on, I've got a different career. To me it's the end of story.''
A peer review of his performance in 2010 found it was not safe for him to perform some of his duties, partly because of the rooms and equipment available to him, but also because he believed his long experience meant he could tell whether there was a response from a child without other evidence.
If Mr Tregonning has ''moved on'', does the SDHB think it has any wider and ongoing responsibility to mis- and late-diagnosed children in light of its admission of failure in the tribunal case?Maybe.
Lynda McCutcheon, who is the health board's allied health, scientific and technical director, says the board ''regrets any harm which has occurred as a result of this issue''. But any further apologies would have to be considered ''on an individual basis'', Ms McCutcheon says.
Assessing harm ''is a very complex area'' and the board would ''work with any families who raise issues''.
Adding another layer of complexity is the new claim that hospital doctors were aware of Mr Tregonning's short-comings for several years.
Gary McAuslin's son Connor had regular hearing tests at Dunedin Hospital, but was not diagnosed with mild to severe high frequency hearing loss in both ears until after Mr Tregonning left.
The Corstorphine, Dunedin, family did receive a verbal apology from a paediatrician, but it was delivered with a bombshell, Mr McAuslin said.
''He said the doctors had been trying to get rid of Simon for years,'' Mr McAuslin said.
''So they knew about this ... They knew he was falling down with the children and they let him carry on. What's that about? What the hell's going on?''That's serious. It's left Connor in a place where we have to try to pick up the pieces.''
Asked for the health board's response, Ms McCutcheon, in a written reply late last week, said, ''Before these issues were brought to our attention we were not aware of any previous issues raised from clinicians''.
While the SDHB ruminates on its responsibilities, Mr McAuslin wants ACC to also front up.
Connor was ''micro-prem'' - born at 24 weeks and weighing just 625g. He was also given antibiotics and ended up with late-diagnosed hearing loss.
''There is another boy at school who has hearing loss very similar to Connor's,'' his mother, Jennifer Shedden, says.
''But his verbal skills are completely different. And he was picked up earlier.''
Mr McAuslin holds the health board responsible as Mr Tregonning's employer.
''They are just bloody lucky that we can't sue them,'' he says.
''Because I absolutely would sue them for what he did.''
So, instead, Connor's parents lodged a claim with ACC. But in 2012, ACC declined the claim. It did agree there had been physical injury which was caused by treatment. But it said the hearing loss was ''an ordinary consequence'' of the treatment and therefore excluded from cover.
Asked whether ACC still covered medical misadventure, ACC spokeswoman Stephanie Melville told Otago Daily Times the medical misadventure legislation was replaced with treatment injury provisions in mid-2005.
Ms Melville says treatment injury cover does not include ''outcomes'' that are, for example, ''a necessary part or ordinary consequence of treatment'' or are ''caused by a decision an organisation made when allocating health resources''.
Mr McAuslin and Ms Shedden say they fear for Connor's future and just want someone to assure them their son will continue to get help to address the mistakes that have been made.
''We're concerned about what is going to happen once Connor turns 18 and his hearing aids don't get funded any more. It's $4000 a hearing aid, roughly,'' Mr McAuslin says.
''We know that he would have had some deafness regardless. But if he was diagnosed earlier he would be a lot further on with all of this. He would have heard birds chirp in trees and he would have heard cats. ''When he heard the cat purr for the first time, he was like `What is that?'
''He's coming from a few years behind now ... For him it's bloody hard.''
