Congenital heart defect is a silent killer. It is the top cause of death for infants and children in New Zealand, however those youngsters affected sometimes don't even look sick. Bay of Plenty Times health reporter Jean Bell speaks to a Te Puke mum who fought for surgery for her young boy all the way to Australia.
From the way he almost bounces off the walls, it's hard to believe Cohen Verwey was once so sick he was like a "potato''.
The 4-year-old is anything but as he races around the living room, launching himself on to a couch as he yells "watch this!"
"He's just started gymnastics," his mother Shannon Verwey laughs.
At one point he charges into the kitchen and emerges with a mouthful of pancake and voraciously chews, his cheeks bulging like a squirrel.
At first look, Cohen seems like any normal child - he loves monster trucks, the hot pools and wants a drone - but his chirpy demeanour masks the health battles he has fought since day one.
Cohen was born with an atrial septal defect and ventricular septal defect - two holes in his heart - with an artery wrapped around his oesophagus and trachea.
Aged 2, he endured a heart surgery in Melbourne - a life-changing operation his parents, Shannon and David, had to fight for.
But Cohen is full of beans despite his woes.
"He's the happiest sick kid you'll ever meet," Shannon says.
"He'd have the worst pneumonia and he'd be like, 'party at the hospital' and give all the nurses smiles.''
Cohen was only three days old when a midwife detected a heart murmur. He was diagnosed with a heart defect and the hospital told his parents to watch him and sent them home, Shannon says.
This began years of unresolved health issues.
"He was like a potato. He couldn't walk, talk or sit up properly ... he just existed."
He was prone to infections, didn't tolerate vaccinations and at 6 months old, he had a feeding tube put in after he "constantly power-chucked''.
"After every feed, we'd have to line the carpets around him with towels as there'd be lines of vomit shooting everywhere."
It was later revealed this was due to the artery constricting his oesophagus, she says.
At age 1, he had strange spasms which led to genetic testing showing he had 22q11.2 deletion syndrome, also known as DiGeorge syndrome.
The diagnosis explained some of his health issues, but his heart problems weren't addressed because the syndrome took the blame, she says.
"It made it difficult to get anywhere on the heart front - it was always, watch and wait," Shannon says.
The very draining experience began to take a toll on Shannon - visitors to the house were restricted and she lost contact with friends.
She even got ill with shingles from the stress.
The couple sought a second opinion after their little boy deteriorated even further when he approached his second birthday.
With family support, the couple decided to head to Melbourne to get Cohen the heart surgery they felt he urgently needed.
"We weren't about to wait for him to get worse when he was already bad enough," Shannon says.
The impact of the surgery was "instant and massive", she says.
"He was happier because he could move, eat, live."
She says HeartKids provided support throughout the journey and she had recently become a committee member for the organisation.
HeartKids is a not-for-profit organisation that supports people living with a childhood heart condition and their families. It does not receive government funding and relies on the generosity of the New Zealand public to survive. This week was HeartKids Awareness Week and the organisation called for donations.
About congenital heart defect (CHD)
• Every week, 12 babies are born with a congenital heart defect in New Zealand, affecting an additional 600 families a year
• No 1 cause of death for infants and newborns in New Zealand
• Annually, more than 50 children die from the condition
• Most common serious birth abnormality in New Zealand • Every year in New Zealand, more than 600 major heart surgeries are performed on children or babies (sometimes in their first few hours of life)
- Source: Heart Kids
About 22q11.2 deletion (DiGeorge) syndrome
• The genetic syndrome is the result of a submicroscopic deletion on the long arm of chromosome 22 in the "q11" region.
• Affects about 1 in 1000-2000 people, making it the second most prevalent genetic syndrome after Down syndrome
• Most common genetic syndrome associated with congenital heart defects
• 180 health anomalies associated with it
- Source: 22q Foundation Australia and New Zealand