Heart Kids New Zealand is here for you.

 

The diagnosis of a childhood heart condition can be devastating and the impact far-reaching; heart children, parents, siblings, grandparents and friends can all find themselves facing the emotions and challenges of a heart journey.

At Heart Kids NZ we understand that more than anyone, and that is why we are here to support the entire whānau. With a specialised hospital and community family support team we provide free, vital support services where and when families need it.

Whether you need us just a little, or a whole lot, we are here for you because no family should ever walk a heart journey alone.

To become a member click here

Heart Families, you are not alone.

Being told your unborn baby or child has a heart condition can turn your world upside down.

At Heart Kids NZ, we support heart kids and their whānau because we understand the challenges of life with a childhood heart condition, and we know the impact it can have on families.

This is why we walk alongside the whole whānau as they navigate the highs and lows of their heart journey. From the time of diagnosis, the hospital visits, tests, surgeries and procedures, the weeks away from home and the return back to your community with a medically vulnerable child. We are here to support you and your whānau through it all so you never feel alone.

Heart Kids NZ has been supporting heart families for 40 years and we have the experience to know where and when families need support most.

Our specialised hospital and community family support teams can help you with practical, social and emotional support.

Resources for Heart Families:

Heart Teens, we're here to support you.

There are many challenges to face in the teen years and having a heart condition is a big one.

But you don’t need to face them alone.

The Heart Kids NZ team is here to help support you as you navigate your teenage years and transition from paediatric to adult care.

We know teenagers need their own support systems, tailored just for them. This is why we offer services just for teenagers like the Heart Kids NZ Teen Beat camp, transition evenings, opportunities to connect with other heart teens and a whole bunch of teen-specific resources.

Resources for Heart Teens:

Heart Adults, we are here for you.

Heart Adults – Supporting You Beyond Childhood

At Heart Kids NZ, we understand that the journey with a childhood heart condition doesn’t end when you grow up. For those living with congenital heart conditions, the transition from being a “Heart Kid” to a “Heart Adult” comes with unique challenges. Whether you’re managing ongoing health care, balancing work, study, or family, or simply looking for someone who understands your experience, we’re here to support you every step of the way.

 

What we offer:

  • Support tailored for heart adults: We provide one-on-one support helping you manage the complexities of health care, connect with others who share your journey, and access resources to help you thrive.
  • Community connections:  Join our Heart Adult community and connect with others through support groups, events, and forums.
  • Information and resources: Whether it’s advice on managing your condition, navigating the health care system, or staying healthy, we’re here to help.
  • Facebook Group: We have a private Facebook group for our heart adult community. You can join here.

Resources for Heart Adults:

Heart Angel Families, we've got you, too!

Each year in Aotearoa NZ, approximately 50 children will die from a childhood heart condition.

We call these children our Heart Angels, and we are here for their families.

The loss of a child is devastating and far-reaching. Heart Kids NZ has a dedicated family support team who can provide families with professional, practical and emotional support. Families may seek support immediately after, months and even years following the loss of their child.

Grief has no timeline, whenever you need us, we are here for you.

Resources for Heart Angel Families:

Heart Parents, Caregivers & Teens, this is for you.

Transition is used to describe the gradual planning, papering and moving on from children’s health (paediatrics) to the adult health services.

Transitioning can be an exciting and challenging time for both the young person and their parents and caregivers. It is often described by parents as one of their most worrying times as they learn to step back and allow their young adult child to take charge of their heart health.

There is support available for planning this process which generally begins around the age of 12-13 years by getting ready for the transition, starting to transition 14-15 years, and completing the transition 15-16 years.

Working alongside health professionals Heart Kids NZ aims to strengthen transition services through a coordinated and agile approach so families feel informed, confident and supported as together they face the challenges and anxiety that can come with transition.

Transition Resources:

Here Is How We Support Kiwi Heart Families

Support

Heart Kids NZ offers a range of free support services for heart kids, teens, adults and whānau. With a national network of trained family support taituarā, we are able to provide timely, professional, practical and emotional support where and when families need it.

In hospitals or in the community, our family support team will walk alongside families as they navigate the challenges of a childhood heart condition. Services include prenatal support, hospital care packs, food and phone vouchers, travel subsidies for families who must travel from another region for treatment, CPR training, access to Coaguchek machines, MedicAlert bracelets and St John memberships.

Our family support team are experienced, compassionate, warm, approachable, and care deeply for our heart families. We encourage anyone facing a heart journey to reach out to our team.

Meet Our Family Support Taituarā
Information

The diagnosis of a childhood heart condition can be overwhelming, unfamiliar medical terms, tests, procedures, surgeries and at times lengthy stays in the hospital. Families need access to information and resources that will assist them with the challenges they are suddenly faced with.

At Heart Kids NZ, we believe knowledge is empowering for heart families. Our family support team is equipped with a range of information and resources including books and publications written by other heart parents and medical professionals.

We hold informative ‘PULSE’ events throughout the year and run a bi-annual Education Forum where heart adults and families can attend workshops and training sessions that cover a range of topics.

Your family support taituarā is able to share information and answers to any questions you might have.

Contact Your Local Family Support Taituarā
Connection

Connections are vital for any family walking a heart journey. Connections help families feel less isolated and give them the ability to share their journey with others. At Heart Kids NZ, we have branches across the country run by kind-hearted volunteers who organise fun events where families can meet other heart families in their region.

Our family support taituarā hold regular ‘Murmurs’ coffee groups for parents to connect with each other face-to-face and offer online ‘National Murmurs’ which has heart members all across the country connecting online.

We also know how important it is for heart kids and teens to meet peers who understand what life with a heart condition is like. Camp Brave Hearts and Camp Teen Beat are just for heart kids. Camps are full of wonderful, fun activities but they are also full of connections, a place where heart kids make lifelong friendships and begin to develop their own peer-to-peer support network.

Connect With Your Local Heart Community
Hope

Thanks to ongoing research and medical advances in the past two decades more and more heart children live and thrive into adulthood.

As a primary organisation supporting whānau impacted by childhood heart conditions, Heart Kids NZ is well placed to support research into both childhood and adult CHD.

Our members can provide critical input into ongoing research and development that facilitates better outcomes for all.

Heart Kids NZ is committed to continuing to engage collaboratively with medical and social researchers – Children & Young People’s Health Collective NZ, ACHD database, ACHD web-based register, CHAANZ – to grow the body of knowledge available for our members and thereby foster hope for their futures.

We Run Specialised Support Groups

Dedicated group for heart adults who had a heart transplant.

At Heart Kids NZ, we have a dedicated group that offers support and connection for our heart members 18 years and older who have had a heart transplant.

This group meets three times a year via Zoom so that members from across New Zealand can attend. Meetings cover a range of topics such as emotional resilience, supporting our partners, and contacting our donors. Other topics that are relevant, and of interest to members are also covered as requested.

Group members support each other in living successfully with heart transplants along with other transplants. The group is a safe space for heart transplant journeys and stories to be shared.

Contact us if you’re interested in being involved:

  • Michael Bowey at michael@heartkids.org.nz

Dedicated group for rheumatic heart members.

Heart Kids NZ is committed to growing the support of our rheumatic heart members.

We’re currently establishing an accurate database of our members who are affected by rheumatic fever and rheumatic heart disease. We are at the early stages of identifying what supports and resources are the most helpful and meaningful whilst also developing connections and education opportunities.

Recently a Facebook group has been established to help us connect with anyone who is impacted by rheumatic fever – members, their family and whānau.

Join the Facebook group via the link below:

Meet Some of The Heart Members We Support

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Max’s Heart Journey

From heart surgery at three, to Karate World Champs at 15.

Heather’s Heart Story

Heather's several conditions meant she had to work hard to gain skills and independence.

George’s Heart Story

From Starship to the Football Field: George’s Heart Story.

Arthur’s Heart Story

Arthur's parents share their family's heart journey.