This is Heart Kids New Zealand awareness month Rob Lutter urges support for the children who ''fight, warrior and soldier their way through life''.
It is a privilege to work for Heart Kids, leading our dedicated team.
We work with families throughout New Zealand with babies and children born with congenital heart defects (CHD), the world's number one birth defect.
Twelve babies are born each week in New Zealand with CHD alone.
We see on a daily basis the roller-coaster ride that the families have to go through.
The children with most severe cases require ongoing care all their lives.
They fight the good fight every single day. Others tragically do not win the war.
CHD is the No1 cause of death in newborn to 4-year-olds in New Zealand. More than 50 families a year will lose a baby, child or teenager to this disease. Heart Kids supports the families through the grieving process.
There are more than 40 different heart disease defects and no cure, only monitoring, procedures and surgical intervention.
We find children with severe defects have other developmental and learning disabilities as they grow, compounding the problems they face.
We are there to help families so they do not need to take this journey alone.
With more than 450 open heart surgeries performed and 650 other procedures at Starship every year, the Heart Kids families are in need of a lot of support.
Not only that, we assist them in the lead-up to surgery and also the lengthy recovery when they are back home.
We have more than 20 family support workers around New Zealand.
Heart Kids provides monitoring medical devices that the Government does not fund, for our most severely ill children.
This allows our families to check children at home without having to go to the doctor every week.
Heart Kids holds yearly camps: Camp Brave Hearts for children aged 8 to 13 and Camp Teen Beat for those aged 14 to 17.
More than 100 children attend every year. We provide a full medical team so children can do all the fun things they would normally not be able to do. They also get to make lifelong friends.
We collaborate with other like-minded child health organisations; we share the same base philosophies, face the same issues and work together where possible. We have little association with the Heart Foundation.
Our organisational purpose is separate and unique to our heart kids.
Over the next three years, we are embarking on enhancing our service delivery to our families. We will be strengthening our family support worker base throughout New Zealand and at Starship Hospital to ensure we provide consistency of service throughout New Zealand for our 6000-plus families.
Rob Lutter is CEO of Heart Kids NZ.
