Waikato mum's love saves toddler son with extremely rare heart condition

Chyvaurne Hunter-Webber can't imagine her life without her precious baby boy Zayne. Photo / Supplied

A Waikato mum remembers the heartbreak of holding her toddler in her arms knowing he was close to death and fearing he would not be saved.

Chyvaurne Hunter-Webber's 3-year-old son Zayne is the fourth, and youngest, child in New Zealand to be diagnosed with infective endocarditis - an "extremely difficult condition to detect".

It's a serious infection in the heart that has stripped her "boisterous" son of the ability to talk.

The mum-of-two wants to share her story to remind other mums of the importance of following their maternal instinct.

She believes staff were slow to diagnose Zayne's condition and it was only after she pushed for tests that the rare condition was detected.

"If I hadn't pushed for more tests and refused to leave the hospital then my baby probably wouldn't be alive.

"We are our children's voices, and we need to make sure our voice is heard."

Zayne was born completely healthy and had no alarming family medical history.

In August last year, the then 2-year-old developed a high temperature and started vomiting.

"There had been a bug going around at his kindy so at first I thought it was that and wasn't too worried."

The next morning Zayne's temperature hiked to 43C and he started vomiting black.

Hunter-Webber said she rushed her son into an after-hours medical centre before getting directed to Waikato Hospital's emergency department.

Zayne Hunter-Pakeho (3) is alive thanks to his mum sticking to her instinct. Photo / Supplied

After five days in hospital, being put on a feeding tube as he wasn't eating and being given pain relief, the family were left with few answers.

She said she was told it was just a viral infection and they could go home.

"I freaked out because I knew it was more serious than that. It was terrifying."

Eventually, the pair were moved to an observation ward and it was there Zayne was examined by a group of student doctors - one of who found a second heart murmur.

"I felt crazy because all this time I had been asking for more tests on his heart and no one would listen."

A heart scan found he had a leaky heart valve that was sending the oxygenated blood back into his lungs - which can cause heart failure, shortness of breath and can be life-threatening.

An MRI later confirmed his diagnosis.

"The feeling I got when I heard those words slip from the doctors lips is something that I had never ever felt before.

Zayne (3) spent three weeks at Auckland's Starship Hospital under heavy sedation. Photo / Supplied

"I wouldn't wish that upon my worst enemy. From that day, I was an empty shell. Numb and angry."

Zayne was rushed to Auckland's Starship Hospital where he suffered acute kidney failure and was hooked up to a dialysis machine.

He also suffered septicaemia, silent seizures and was put under deep sedation for three weeks. After he had to relearn how to walk, run, eat and swallow.

He still can't talk, Hunter-Webber said.

"My baby nearly died in my arms twice. His birthday passed and we celebrated bedside with him and cried."

His prognosis still remains largely unknown as he waits for open-heart surgery, which he will likely need every year until he is 18 years old.

"With the winter months upon us, please I beg you, listen to what your instincts are trying to tell you."

A Waikato District Health Board spokesman said infective endocarditis was an extremely rare disease and often hard to detect, particularly in young children.

"Patients presenting with broad, non-specific symptoms often require several tests and reviews over the course of a stay to determine, and also to rule out, a possible diagnosis.

"On review of this case we have confidence in the care provided which included regular and comprehensive medical reviews.

"There was no indication noted that the medical team felt the patient should be discharged prior to their transfer to Starship."