Coroner finds very rare disease in kids may have contributed to Taya Awhina Kauri’s death

Taya Kauri, 9, went into a cardiac arrest and died in February 2019 after earlier complaining of a racing heart. Photo / Givealittle

When Taya Awhina Kauri woke up one morning with a racing heart her mother initially wondered if she might be anxious about going to school.

But, it also wasn’t the first time the 9-year-old had been unwell so her family took her to the doctors. She never made it home again.

Now a coroner has suggested the Auckland schoolgirl may have suffered from a “surprisingly silent disease” that is very rare in children.

After her death in February 2019 her family described her as a “princess”. Someone who was as kind and nurturing, and someone who looked out for those who were less fortunate than her.

“She was intelligent and funny with her big sparkly eyes and a cheeky little laugh,” they wrote on a Givealittle page.

“We are left in pieces at her loss and the thought of a future without her is incomprehensible.”

According to a coroner’s decision released today Taya was a healthy child up until 2018 when she began experiencing bad migraines, shortness of breath and tiredness, with her symptoms initially put down to anxiety.

Despite this, she went to school almost every day.

On the morning of her death she started complaining of chest pains and had difficulty getting up.

Her mother Monique Kauri later told Stuff she had complained of a burning feeling in her chest and a fast heartbeat.

She took her to Papakura’s Accident and Emergency clinic where Taya’s heart rate was almost more than double a normal resting heart beat and she was rushed by ambulance to Middlemore Hospital where she went into cardiac arrest. Taya was taken into ICU, where her life support was later turned off.

Taya Kauri, 9, went into a cardiac arrest and died after earlier complaining of a racing heart. Photo / Givealittle

Coroner Amelia Steel ruled Tayla’s cause of death was “sudden cardiac death and hypertrophy and dilation of the right ventricle (a fluid filled cavity) of the heart”.

The usual cause of right heart enlargement is lung disease obstructing the flow of blood into the lungs. But the forensic pathologist who conducted Taya’s postmortem wasn’t able to determine the cause of the right ventricular dilation and hypertrophy.

He did, however, find that Taya’s heart weighed twice that of a girl her age.

Her death was subsequently reviewed by a team of cardiologists in New Zealand and an expert in London.

Coroner Steel raises the possibility that Taya may have suffered from primary pulmonary hypertension – a type of high blood pressure that affects the arteries in the lungs and the right side of the heart.

She says it as a “surprisingly silent disease” that is very rare in children and often difficult to diagnose. That’s because many of the symptoms, including decreased exercise tolerance, shortness of breath, chest pain and fainting, or near fainting, are non-specific.

Paediatrician Dr Nicholas Baker said the diagnosis wasn’t considered by Taya’s doctor’s even though her symptoms, including shortness of breath, reduced exercise tolerance, headaches, temporary loss of feeling in an arm, lethargy and a reduced appetite – didn’t point to a cardiac diagnosis.

Dr Baker noted that a review of a 2018 electrocardiogram (ECG) – a quick test to check the heartbeat – showed signs of right ventricular overload. He suggested if this had been picked up, additional testing could have led to the diagnosis of pulmonary hypertension.

But he also noted there was no cure for the disease and despite access to modern drugs for most people such a diagnosis represented a progressive and life-limiting disease that significantly impacted on people’s quality of life.

In her findings, the coroner also noted, “Dr Baker agrees with the other reports that sadly an earlier diagnosis would most likely not have opened options for treatment that would have significantly prolonged Taya’s life.”

Counties Manukau Health (as it was then known) completed an adverse event following Taya’s death, including reviewing how it interpreted ECGs and had made changes accordingly.

Coroner Steel said having considered all the medical reports and the fact there was no evidence of suspicious circumstances, she decided not to conduct an inquiry into Taya’s death.

Catherine Hutton is an Open Justice reporter, based in Wellington. She has worked as a journalist for 20 years, including at the Waikato Times and RNZ. Most recently she was working as a media advisor at the Ministry of Justice.