Fit and healthy Kiwis dying unexpectedly from mysterious adult condition

Piata Tauwhare, 30, from Hokitika, was found dead in a tanning salon in Swansea on May 28. Photo / delivered

Every year otherwise healthy New Zealanders drop dead without warning. Studies hope new funding will prevent more deaths, writes health reporter Emma Russell.

Ifan Jones recalls kissing his 30-year-old wife goodbye and saying “I love you” as he did every morning before she left for work.

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That Saturday afternoon, May 28, the New Zealander was found dead in a tanning salon in Swansea, Wales.

Piata Tauwhare was healthy, loved sports, ate well, did not smoke and rarely drank alcohol, Jones told the Herald on Sunday.

While her death is being investigated by the coroner, Jones was told by police that the cause was suspected to be sudden arrhythmic death syndrome (SADS), also known as adult sudden death syndrome.

SADS is an umbrella term used to describe deaths of otherwise healthy people, usually under 40, after their hearts stop beating due to an often undiagnosed genetic instability of the heart.

The condition is different from a heart attack, which occurs when an artery that supplies blood and oxygen to the heart is blocked by fatty, cholesterol-containing deposits that have built up over time.

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The Hokitika-born Tauwhare had no known heart disease and no family history of heart disease, Jones said.

Knowing nothing about SADS has left Jones with more questions than answers and, he says, his world has been shattered.

“It has destroyed my life. I go to football practice and I come home and she is not there, my life is ruined,” he told the Herald on Sunday.

“She was everything to me, so down to earth, never had anything bad to say about anyone.”

The New Zealand coroner’s office has recorded 16 deaths from SADS in the past five years, but the total number of Kiwis that have died from the genetic condition is likely to be much higher, as not all deaths are referred to the coroner.

A registry was developed in 2008 by cardiologist and electrophysiologist Martin Stiles and a team from the University of Auckland’s Waikato Clinical School, thanks to seed funding from Cure Kids.

It aims to help identify and protect young people who may be at risk for SADS.

Anyone who has died or survived cardiac arrest with no known cause can be referred to Stiles and his team by hospitals, often cardiologists. The Department of Justice can also report deaths without a cause.

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Further tests are then performed to confirm SADS. Next, researchers try to track down relatives who may be at risk and whether they want to undergo a genetic blood test.

Stiles said there was a 50 percent risk for every first-degree relative for most conditions.

“We’re most interested in it affecting young people, so that’s generally people between the ages of 1 and 40, after which non-genetic diseases take over,” Stiles said.

A registry to track this sudden cardiac death was developed in 2008 by cardiologist and electrophysiologist Martin Stiles and a team from Auckland University's Waikato Clinical School.  Photo / Included
A registry to track this sudden cardiac death was developed in 2008 by cardiologist and electrophysiologist Martin Stiles and a team from Auckland University’s Waikato Clinical School. Photo / Included

Stiles said they have 5092 registered members — mostly at-risk relatives, along with some who had died of SADS.

“When the family sees us about their loved one who has passed away, they mourn and strangely, sometimes they feel a little guilty about passing a hereditary disease to their child. Yet they are no longer guilty of passing on a genetic disease than they are for passing on a gene for blue eyes.”

He said his team, which included social workers, psychologists and genetic counselors, helped families in this process to investigate why their child died.

There are a number of preventions that can help lower the risk, Stiles said, including avoiding certain activities and reducing alcohol intake.

Getting a fever can be a risky period, so those at risk should be “aggressive” when treating that fever with acetaminophen and fluids.

People at risk for SADS may need an implanted defibrillator to shock their hearts if they go into cardiac arrest.

While Auckland, Waikato and Wellington each have someone tracking down families in their larger regions, Stiles said, there was none available in the South Island.

“It’s kind of weird that it happened that way, but that’s just how funding has gone down.”

The team had applied for further research funding from Pūtahi Manawa, Healthy Hearts for Aotearoa New Zealand (HHANZ), to close this inequality gap.

They would hear in the coming weeks if that worked, Stiles said.

There were also ethnic disadvantages, as there were far fewer people of Polynesian ancestry known to have the genetic disorder compared to those of European ancestry. This meant that it was more difficult to test Māori and Pasifika, as their genetic database – made up of known mutations – was not as large as their Pākehā counterparts.

Stiles said further funding would help address this.

“We will look at Māori families affected by an inherited disease that have no genetic diagnosis and we will do detailed genetic studies with the aim of ‘upgrading’ genetic variants to ‘disease-causing mutations’.”

A registry for SADS in the South Island would help families like that of Greg Watchman, 57, who died after returning from an hour-long bike ride.

On a windy November afternoon, Blenheim’s father used a ladder to grab an umbrella that had blown onto the roof.

When he came back down, he was short of breath. He asked his 17-year-old stepdaughter to get him a paper bag to inhale.

Andrea and Greg Watchman cruised to the United States for two years before suddenly dropping dead.  Photo / Included
Andrea and Greg Watchman cruised to the United States for two years before suddenly dropping dead. Photo / Included

She did, but by the time she returned, he had fallen to the floor.

“Her boyfriend did CPR right away and I was home in six or seven minutes. By then the ambulance and fire brigade were there,” said Andrea, Greg’s wife.

CPR was performed for 40 minutes, but he could not be resuscitated. He died on November 15, 2018.

That day, Andrea is still chasing.

“It came completely out of the blue and nobody saw it coming. I still don’t really understand what happened,” said his widow.

Meanwhile, Jones, a warehouse worker, said the loss of his wife was incredibly hard on him, friends and family.

“I’m a mess, I’m just depressed and I don’t know what to do with myself.”

He said Tauwhare’s family and friends had shown him much love and support when he visited New Zealand a few months ago.

Jones and Tauwhare got married last September.  Photo / Included
Jones and Tauwhare got married last September. Photo / Included

Her family was understandably devastated, Jones said.

The couple had met two years ago on a night out in Bristol, England, while the Kiwi was traveling.

“She was great, I’ve never” [met] someone like that before,” Jones said.

The couple married on September 1 last year, in a small ceremony in Swansea, witnessed only by his parents.

Jones described his wife – who worked for a mental health service called VitaMinds – as a very generous person and extremely proud of her Kiwi roots.

Other Kiwis lost to SADS

Anita Dell, a mother of two from Blenheim, was 38 when her husband woke up to her panting. She went into cardiac arrest and was unable to be resuscitated. She had no previous heart disease or underlying health condition.

Leanne Gardyne, a mother of three from Richmond, was 46 when her husband woke up to her breathing difficulties in August 2019. Her hands were clenched, she was shaking and her pupils were dilated. He put her on the ground to help her breathe and then called 911, but she was unable to be revived. She had been working as a seafood process worker.

Charles Gray, 66, of Blenheim, is said to be “in a good mood” on the day he died. He was cooking eggs when they started to burn and the house was filling with smoke. A short time later, he was found dead on the lawn.

Nikki Goodfellow, a 50-year-old cashier from Mapua, gasped loudly in her sleep. Her husband tried to wake her up, but failed. The fire brigade was the first on the scene and was unable to resuscitate her.

Gerald Scott, 70, of Nelson was found by a passing motorist who was unresponsive on a public footpath in Nelson. Emergency services performed CPR, but he could not be resuscitated.

Phillip Patira, 52, from Christchurch was playing golf when he became short of breath, clutched at his chest, collapsed and became unresponsive. He suffered from non-insulin dependent diabetes, hypertension, gout and an elevated BMI. The cause of death was SADS, the coroner found.

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