Two-year-old Hineihana Sosefina Mausii died of leukaemia just hours after being discharged from hospital on consecutive days. Nearly six years on, her mother is fighting for her daughter's legacy and to ensure her death was not in vain. Rob Kidd reports.

Tracey Elvins is haunted by a single word: Why.

When her daughter Hineihana Sosefina Mausii died of leukaemia a few weeks shy of her third birthday on September 29, 2013, her questions began.

Some have been answered.

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Reviews of Hineihana's treatment have uncovered the health system's failures at almost every turn.

A coronial inquiry held last month is expected to underscore those shortcomings and make recommendations to avoid future tragedy.

But it will not bring her back.

And for Tracey, it will never answer the question that looms as she tries to go to sleep, that she tries to drown out with the sound of the television or by busying herself with her phone.

"Why did Hineihana have to be the one?"

For nearly six years, Tracey has fought for her daughter, to hold those medical professionals who let her down to account, to overhaul a flawed system.

She sat through the recent Dunedin District Court inquest visibly scrutinising every word of the specialists who gave evidence.

Hineihana Sosefina Mausii was taken to hospital twice in two days and sent home on both occasions. She died of leukaemia a few weeks shy of her third birthday Photo / Supplied
Hineihana Sosefina Mausii was taken to hospital twice in two days and sent home on both occasions. She died of leukaemia a few weeks shy of her third birthday Photo / Supplied

Her knowledge of clinical procedure and terminology is now far beyond most lay people.

It has, though, taken its toll.

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"I'm broken on the inside. I miss her so much. That's why she's all around," Tracey said, gesturing at the walls of her Dunedin home.

Smiling back are scores of photos of Hineihana.

She was "cheeky as", her mother says.

There are dozens of videos too, crammed into the memory of a computer in the corner of the lounge.

Hineihana singing, dancing, the first time she saw snow.

Simple, perfect moments in a short, innocent life.

Tracey seldom looks through them, and the agony their beauty evokes is obvious.

Among the many pictures is one of Hineihana walking along a path; a doll tucked in the crook of her arm, a shaft of light illuminating her face.

And that ever-present grin.

It was taken just three days before she died.

Hineihana's symptoms were consistent with an upper respiratory tract infection, doctors said, and advised paracetamol and cooling measures to lower her fever. Photo / Supplied
Hineihana's symptoms were consistent with an upper respiratory tract infection, doctors said, and advised paracetamol and cooling measures to lower her fever. Photo / Supplied

Tracey drove her to pre-school that day but when she fell asleep in the back of the car, she decided against it.

Hineihana had developed a cough and a runny nose that week, so she played it safe.

After refusing dinner, the toddler went to bed with a dose of paracetamol.

Shortly after midnight she woke up screaming and feverish, so Tracey took her to hospital.

A doctor said Hineihana's symptoms were consistent with an upper respiratory tract infection and advised paracetamol and cooling measures to bring down her temperature.

He wrote out a request for a follow-up phone call from the paediatric department.

It never came.

While the botch was not found to be a significant breach by the Health & Disciplinary Commissioner (HDC) in the 2015 investigation, Tracey is adamant it was a huge missed opportunity to have Hineihana correctly diagnosed.

"If [they had called] they would have found she was not actually improving. They probably would have said `come back, let us see her' and they could have started something then," she said.

"It's heaps more time."

Instead, Hineihana went home and her condition plummeted.

Tracey tried to get her to sleep but she woke repeatedly, requesting water.

She began to refuse food, would not sleep in her bed, suffered diarrhoea and by the next day she was making a humming noise as she exhaled.

Back to hospital.

This time Hineihana was triaged as category two, meaning the symptoms were possibly life-threatening - she needed to be seen within 10 minutes.

She was breathing 44 times a minute and had a heart rate of 175 - much higher than they should have been.

Independent specialists later said that alone, with the fever and decline from the previous day's visit, should have have resulted in admission and sparked a variety of tests.

When Tracey later told the pathologist of those warning signs that had been missed, the woman's response strayed from medical opinion.

"Holy f... ."

Instead of giving the sick child a bed or placing her in the hands of paediatric specialists, a junior doctor took the file to a consultant and the previous day's diagnosis of a probable infection was confirmed.

The consultant did not even examine Hineihana.

Hineihana's father Sam repeatedly asked doctors why his daughter was breathing so fast, but Tracey interjected, trusting that doctors wouldn't send them home if it was serious. Photo / Supplied
Hineihana's father Sam repeatedly asked doctors why his daughter was breathing so fast, but Tracey interjected, trusting that doctors wouldn't send them home if it was serious. Photo / Supplied

The man - who now works overseas - said he looked over at the patient from his work station and she appeared to be "well and happy".

Tracey continues to wonder what it was the man saw when he looked over at them.

"I had on a black beanie and a black jacket. And I'm a Maori woman carrying this little brown baby. I don't want there to be any prejudice in there, but was there? I don't know," she said.

Less than an hour after their arrival at the hospital she was discharged.

Hineihana's father Sam repeatedly asked doctors why she was breathing so fast but Tracey interjected.

They had said she would be fine.

Surely the doctors had it right.

What she did not know as they left the hospital was that the junior doctor secretly harboured concerns but did not feel able to challenge his superior.

A nurse who had seen Hineihana said she was also "surprised" when she discovered the girl had been sent home but when she went to quiz the doctors involved, their shifts had finished.

And there was still one more systemic botch to come.

When Hineihana's temperature exceeded 40degC the next day, Tracey called the emergency department and was put through to Healthline.

In the space of a three-minute-12-second call, during which the nurse on the other end of the phone could hear the girl's laboured, wheezing breaths, he failed to establish the precariousness of the situation.

During the review that followed, the nurse described being "caught off guard" with it being his first call of the day.

"I was admittedly startled when I first received this call," he said. "There is so much that I can identify now that was completely wrong in the way I handled the call."

When Tracey hung up in frustration midway through the conversation, the Healthline operator - who has since vacated the role - assumed she was going to hospital.

But having been there twice in two days and been told things would improve, she did not want to be told the same thing a third time.

Sam came round to watch Hineihana, while Tracey tried to sleep after the torrid preceding nights.

Minutes later, their worst fears were realised.

"There's something wrong, she's changing colour," Sam said.

Tracey saw her child turning blue.

"From when I got out of bed that day, we're talking five minutes; she's sick, we're going to take her to the hospital, to f... she's not breathing, to oh my God we're doing CPR. Next minute we're in resus," she said.

Friends and family flooded the hospital.

Tracey was outside trying to convince herself it would be fine, her daughter was a fighter after all.

As a nurse came to find her, she assumed Hineihana had been stabilised.

She never had a chance.

"I just remember walking in and all the nurses and doctors were standing back and Hineihana was lying on that bed."

Tracey does not cry much any more.

But the image is too much.

Among the horror, tears and desolate emptiness, Tracey remembers the police turning up.

"They had to come in case it was our neglect," she said.

"They weren't there for the doctors."

The HDC review found the hospital consultant and the Healthline nurse had breached practising standards; the junior doctor was censured over his actions.

The Southern District Health Board implemented sweeping changes to its practice and policies as a result of the findings and those of an internal assessment.

All parties at fault apologised to Hineihana's whanau in writing.

Words. They provided little solace.

"All I wanted was for them to die, the same as Hinei did," Tracey said.

But even if time had not blunted the pain of losing her daughter, it had tempered her fury.

"I just hope that they're hurting. I hope that they think about Hineihana. I hope they just remember what they didn't do because I've thought about it every minute of every day."

The two doctors and the nurse whose failings were highlighted by the HDC have had name suppression since proceedings began.

Tracey was happy for that to remain.

It has never been her aim to thrust them into the spotlight, to name and shame.

Her motivation is simple.

"The goal ... is to make it better for other people so they don't have to go through this. I wouldn't wish this on anyone," she said.

Tracey's mother, Lesley, has seen the devastating effects, the relentless grief that pursues her.

She described her daughter as "wrecked" by the experience but her immense pride was clear.

Six years of heartbreak and Tracey continued to fight.

"Isn't she amazing?" Lesley said.

For Tracey, the scrap went on it was crucial her little girl was not forgotten.

"I want the whole thing to be Hineihana's legacy, all the changes they've made; so they're not going to close the book on her. They're going to remember her forever."

SDHB chief medical officer Dr Nigel Millar was asked at last month's inquest whether there was any chance the tragedy could be repeated, with the policies and procedures now in place.

He was close to certain that if the circumstances were repeated now, there was no chance a patient would be sent home.

Dozens, hundreds of lives, maybe more, could be saved or changed by Hineihana's tragic death.

The parents of those children may never even realise the unwitting sacrifice a Dunedin toddler made.

Tracey has no doubt her girl will be up there watching it all.

And smiling.