After Connor Williams first received his mechanical aortic valve, his heart beat so loud kids in his class at mat time looked around to see where the loud ticking clock was in the room. When 10-year-old Connor had that open heart surgery three years ago, it was his fourth operation.
Palmerston North boy, 10, on life with a congenital heart defect
Connor Williams, 10, from Palmerston North, has had four major heart surgeries. Photo / Supplied
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"But when you're a little bit older it's cooler.
"When you are 8 you get to go to Heart Kids camp with different themes."
He mentions Harry Potter, and is excited about the Survival theme. He loves to talk about camp.
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There are specialised camps for Heart Kids to attend including Camp Brave Heart and Camp Teen Beat.
One year when Connor was in cabin five the boys were next to the girls' toilet.
"It was 8 o'clock at night and they were talking. We told them, 'Shut up girls'."
It's a fond memory.
He's a sharp kid, and funny.
Connor knows his heart does not work properly.
"I have to go every year to Starship to have a checkup on my heart."
Karina Williams treasures and shows off a photo of her son Connor as a baby.
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She likes it because there's no scar on his baby skin.
When Connor shows his scar at the interview, it is barely visible.
It is surprising that this is where his tiny chest has been opened for the four open-heart surgeries.
Karina says Connor was a normal, healthy baby. And the baby photo shows him to be bonny and beautiful.
Karina and husband Simon realised something was not right when Connor was 8 months old.
He was crawling and eating like a horse but not gaining weight so they decided to seek medical advice.
Yes, Connor had a hole in the heart and he'd need a cardiac catheterisation - a diagnostic procedure.
It was done when he was 9 months old.
When he was 11 months old, the family was flown to Starship children's hospital for Connor's first open heart surgery.
Connor's second open heart surgery was when he was 3 years three months, the third when he was 5 years six months, and just two months shy of his eighth birthday the mechanical valve was fitted.
Karina says friends ask her how they cope given all that Connor has endured.
"We just have to get on with it," she says.
The Williams family is busy - working, school, sport, and of course living with a Heart Kid.
Life goes on.
However, when the question is put to Karina that she must be proud of her inquisitive and courageous son, the many years of 'getting on with it', finally surface.
The emotional rollercoaster the couple and Connor's teenage brother Robbie have endured and kept in check, is a question too close.
The reality of his life-long heart defect and more operations as he outgrows the valve are what Connor and his family have ahead.
"He doesn't think it's anything special when really it is," says Karina.
Karina says Connor understands and manages himself.
He knows he must protect his chest from any full-on knocks when he plays sport.
Rugby or any contact sport is definitely not allowed.
He plays soccer and hockey, and ran in the cross-country, coming 13th out of 18.
Connor has never come last in the cross country; he's gritty and determined and enjoys the outdoor pursuits.
He corrects Karina when she says he's better on his bike. Karina has to explain she meant that it is a more regular action on his bike, that his running prowess was different.
Connor loves understanding how things work.
This is a family who loves playing with Lego.
The building blocks are now more sophisticated, more technical and the mechanised parts hold Connor's attention as he explains how things work.
Brick-ConNZ19 was the first Lego convention to be held in the Manawatū at the end of May and a whopping $9200 was raised and donated to Heart Kids Manawatū.
Karina says the Heart Kids Manawatū community was delighted because it means more families can be supported.
"A family could take their kids to the movies, or bowling, and pay a small cost toward the ticket price."
Heart Kids says for many, their fight starts right from the moment they are born.
"They have to be strong, they have to be brave and they have to fight.
Congenital heart defects
• Every week, 12 babies are born with a congenital heart defect (CHD) in New Zealand, affecting an additional 600 families a year.
• Other previously healthy children can find themselves living with a heart condition as a result of a childhood illness such as rheumatic fever or Kawasaki disease.
• A CHD is the most common serious birth abnormality in New Zealand. There is neither prevention nor cure for a CHD.
• Every year, 1000 children will visit Auckland's Paediatric Heart Unit for treatment.
• Every year in New Zealand, more than 550 major heart surgeries are performed on children or babies (sometimes in their first few hours of life). For many this won't be their last and they will continue to face the day-to-day challenges associated with their heart condition.
• Annually more than 50 Heart Kids will lose their battle and become Heart Angels.
• CHD is the No 1 cause of death for infants and newborns in New Zealand.
Heart Kids
Heart Kids describes itself as the only organisation in New Zealand dedicated to providing lifelong care and support for children, young people and families impacted by childhood heart defects.
For every $25,000 raised Heart Kids can provide one of the following:
• A part time Family Support Worker in an area currently not covered in New Zealand.
• High needs or emergency support to a number of families facing particularly challenging circumstances, such as, long stays in hospital for children from all over New Zealand, family separation challenges, extreme financial difficulties, to name just a few situations.
• The opportunity for 25 Heart Kids to attend specialised camps - Camp Brave Heart or Camp Teen Beat.
• Valuable resources and support for families while in hospital, such as Heart Children Books, information leaflets and vouchers for expenses.
• Heart Kids volunteers make more than 800 frozen meals each year for use by families staying up on Ward23B.
• Heart Kids provides practical and emotional support to help those affected to cope with the immediate and ongoing challenges of living with a heart condition.
• Services provided by Heart Kids include information, education, training, counselling and psycho-social support, specialist equipment, camps, family matching, social affiliation and financial assistance.
• Heart Kids has a specialised family support team located throughout the country to provide support services to heart children and families when they return home from hospital.
• The network of regional branches is run by volunteers, who are parents and caregivers of children with heart conditions.
• Heart Kids branches organise family days, coffee mornings and information evenings to give heart families the opportunity to get together, share ideas and experiences, off-load problems or just have some fun together.
• Heart Kids has more than 9000 members and is growing by 15 per cent each year.
• Heart Kids is not affiliated to the Heart Foundation.
• Heart Kids receives no government funding for the services it provides. It is reliant on the generosity of the New Zealand public.
• To find out more about it or how to get involved, check out its website at www.heartkids.org.nz or its Facebook page at www.facebook.com/heartkidsnz, free phone 0800 543 943 or email info@heartnz.org.nz.
