Katie Hunt was 20 weeks pregnant when she discovered her unborn son might not survive a congenital heart defect.
"It was probably the worst day of my life," said the Hamilton 25-year-old. "I went in thinking I would find out if I'm having a boy or girl and came out knowing he had something wrong with his heart. I did not expect him to survive pregnancy, let alone life."
Noah suffers from hypoplastic right heart syndrome which, in simple terms, means he has half a heart. He had his first surgery at five days old. Now almost 4, he's had five heart surgeries and three open heart surgeries.
"That's just his life. He's had that since he was born. But nothing stops him from doing what he wants, except for me."
Heart Kids are appealing for donations this month to support children, and their families, affected by a heart defect. Over 600 babies are born every year with a congenital heart defect.
Hunt says from the day she found out about Noah's condition, Heart Kids took her under their wing.
"They offered financial assistance, coffee groups, referred me to counselling which was really helpful, they've just been a shoulder to cry on, helped me get friends.
"Knowing my baby was going in for heart surgery was terrifying and traumatic at first, but the staff at Heart Kids helped my family get through the tough times."
Heart Kids New Zealand chief executive Rob Lutter said every week, 12 babies were born with a heart defect in New Zealand and none of them would be cured.
"It's very common for children with heart defects to undergo multiple surgeries and to spend the rest of their lives needing to manage their heart condition."
Lutter said Heart Kids wanted to use the money to expand their services in the regions.
It was also supporting the introduction of an early intervention diagnostic tool.
"Early intervention is the key, yet half of babies suffering a serious heart condition go undetected at birth.
"We believe that all newborns should be offered the pulse oximetry test, which will quickly and painlessly establish whether the babies have a life-threatening heart defect. This test will save lives."
Heart Kids helps more than 2800 children and families with practical and emotional support services. It receives no Government funding.
Text HEART to 2427 to donate $3 or go to helpingheartkids.org.nz