Mum’s Mu intuition helped hel detect rare heart hea condition
Health board voices confidence in care provided despite criticism
AWaikato 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 HunterWebber’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 mums of the importance of following maternal instincts. 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 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 rose to 43C and his vomit became black.
Hunter-Webber rushed him to an after-hours medical centre before being directed to Waikato Hospital’s emergency department.
After Zayne had spent five days in hospital, been put on a feeding tube because he wasn’t eating, and given pain relief, Hunter-Webber said she was told it was 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
I freaked out because I knew it was more serious than that.
Chyvaurne Hunter-Webber
and it was there Zayne was examined by a group of student doctors — one of whom 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 a a leaky valve was sending oxygenated blood back into his lungs — which could cause heart failure, shortness of breath and be life-threatening. An MRI later confirmed the diagnosis.
“The feeling I got when I heard those words slip from the doctor’s lips is something that I had never, ever felt before. I wouldn’t wish that upon my worst enemy. 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 had septicaemia, silent seizures and was under deep sedation for three weeks. He had to relearn how to walk, run, eat and swallow and still couldn’t talk, Hunter-Webber said.
“My baby nearly died in my arms twice. His birthday passed and we celebrated bedside with him and cried.”
Zayne’s prognosis still remains largely unknown as he awaits open-heart surgery, which he will probably need every year until he is 18.
“With the winter months upon us, please, I beg you, listen to what your instincts are trying to tell you,” she implored other mothers.
A Waikato District Health Board spokesman said infective endocarditis was very rare and often hard to detect, particularly in the young.
“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,” he said. “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.”