Rob Lutter: Help support our heart kids

Rob Lutter, CEO of Heart Kids.

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, 12 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 for all of their lives. They fight the good fight every single day. Others tragically do not win the war, some at birth, others pass away before they can even reach beyond toddler age. CHD is the number one cause of death in newborns to 4-year-olds in New Zealand. Over 50 NZ families a year will lose a baby, child or teenager to this disease. Heart Kids support the families through the grieving process.

With over 40 different heart disease defects, there is no cure for our heart kids; only monitoring, procedures and surgical intervention. We also find that the kids with severe defects have other developmental and learning disabilities as they grow too, compounding the problems that they face.

On the good fight we are there to help our families, so that they do not need to take this journey alone. We will stand alongside them, support and help them. With our team at Starship Hospital, Heart Kids will be there when they go through their surgeries and procedures. With over 450 open heart surgeries performed and a further 650 other procedures at Starship every year the Heart Kids families are in need of a lot of support.

Not only that we will also assist them in the lead up to surgery and also the lengthy recovery when they have back home. With over 20 Family Support Workers around New Zealand, we care for our families everywhere, from Northland to Southland. Heart Kids also provide monitoring medical devices that the Government does not fund, for our most severe kids. This allows our families to self-check the kids at home without having to go to the doctor every week.

Heart Kids hold yearly camps for our kids; Camp Bravehearts for 8-13 years old and Camp Teenbeat for 14-17 years old. With over 100 kids attending every year we provide a full medical team so that our kids can do all the fun things that they would normally not be able to do. They also get to make lifelong friends with other Heart Kids. We collaborate with many other like-minded child health organisations we share the same base philosophies, face the same issues and work together on synergies where possible. We have no association with the Heart Foundation. Our organisational purpose is separate and unique to our heart kids.

Over the next three years we will be embarking on enhancing our service delivery to our families. We will be strengthening our Family Support Worker base around New Zealand and at Starship Hospital. We will look to ensure that we provide consistency of service throughout New Zealand for all our 6000-plus families (165 of which are in Hawkes Bay).

This is our awareness month so please support our heart kids who fight, warrior and soldier their way through life.

* Rob Lutter is CEO of Heart Kids NZ (http://www.heartkids.co.nz/) and is a former Napier City Councillor

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