Every week, 12 babies are born with a heart defect in New Zealand, affecting more than 600 new families a year. Thankfully, standing by their side, through every traumatic diagnosis and surgical procedure, is Heart Kids – the only not-for-profit organisation in New Zealand dedicated to supporting heart children, otherwise known as ‘born fighters’, throughout their lives.

This week, Heart Kids are appealing to the New Zealand public for donations to help them continue their dedicated and much needed support for Kiwi kids like seven-year-old Maya Gourlay of Auckland’s North Shore (pictured below).  

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Rob Lutter, CEO of Heart Kids New Zealand, says: “A congenital heart defect (CHD) is the most common serious birth abnormality in New Zealand. While there are surgical procedures that can improve the heart’s function, there is neither a prevention nor cure for a CHD.  


“Every year, 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 operation and they will continue to face the day-to-day challenges associated with their heart condition – and that’s what we are here for, supporting the children and their families through every step of their heart journey.”      Rebecca and Oliver Gourlay, whose twin daughter Maya underwent her first surgery at only nine-days-old, can’t imagine how lonely their journey would have been without the unwavering support of the charity.  


“Maya was born prematurely, alongside healthy twin sister Zoey, weighing just 1070g. Days after the turbulent birth, when we thought the roller coaster was settling, our world fell apart. At just nine-days-old, our little miracle was diagnosed with two life-threatening heart defects. She needed surgery immediately and we were urged to say goodbye. 


“She managed to survive the surgery, although one of the defects ended up being much worse than the doctors had thought. She needed open heart surgery, but she was so small that they couldn’t do it until she weighed around three kilograms. They did a patch job, hoping to get her through, but her little heart failed again and we were left saying goodbye to our baby once more. In our guts, we knew she still had some fight left in her so we begged the surgeons to exhaust every option. We took a risk and we were granted another miracle that we will forever be grateful for thanks to the skill of the cardiac team. 


“When Maya was transferred to ward 23b at six-weeks-old, where all the other heart kids stay, we truly became part of the heart family. Heart Kids family support staff made it their mission to ensure we were okay, ensuring we understood what was happening, what potentially lay ahead and what support we were entitled to. They were a friendly face when life became quite tough, as the wait for bypass surgery was a long one knowing that any day her wee heart could fail. 


“Finally reaching her goal weight at three months, the amazing team ‘fixed’ her broken heart and we are now on two-yearly check-ups. We got so lucky, but we know there is always a chance we could wind up back where we started so we appreciate the gift of her mended heart every day.” Unfortunately, heart children often end up with a myriad of other health complications. In Maya’s case, due to her very low birth weight and multiple heart surgeries, a brain bleed occurred during her first month of life resulting in cerebral palsy. She also suffers from epilepsy, chronic lung disease and nine other health problems.  


“We need to keep Maya in mind for everything we do,” says Rebecca.  


“Will there be access to power for her tube feeding pump? Phone coverage in case she has a seizure? Can we get her wheelchair in? A day doesn’t go by that we don’t have to go over and above what is expected of a parent. But that’s our life, and we so are grateful for it, as well as the incredible on-going support given to Kiwi families like us from Heart Kids – an investment that knows no bounds.” 


Heart Kids has over 8000 members and is growing by 15 per cent each year. They provide heart children and their families with practical, emotional and psycho-social services – be it an information brochure, specialist equipment, leadership development for heart youth and adults, specialised camps for heart kids, an opportunity to connect with other families or a hot meal for hospital-bound families.  


This week, Heart Kids is appealing to Kiwis to donate generously to help them provide much-needed support to New Zealand children born fighting CHD. 


Heart Kids receives no funding from the government and needs your help. You can donate to Heart Kids on the website, www.helpingheartkids.org.nz  


Alternatively, a $3 donation can be made by texting HEART to 2427.