Bereaved Families and Friends

Whether your loss happened recently or many years ago, HeartKids knows the lifelong impact of a life touched by childhood-onset heart disease (CoHD).

Find understanding, support and resources to help you through your journey of grief and remembrance.

Support Through Grief And Loss

HeartKids provides support to anyone who has experienced loss through childhood-onset heart disease (CoHD). We provide empathetic listening, useful resources, and a caring community to assist you through this challenging period. Please contact us; you are not alone in this journey.

We understand many parents, families and friends experience feelings of sadness and loneliness after losing their Heart Angel. At HeartKids, our message to members of our community who have experienced this loss is simple. You do not need to travel this road alone.

HeartKids has over 40 years of experience providing bereavement support for families. As your trusted guide through the grief, emotions and challenges that come with the loss of a child, family member, or friend, our support for bereaved families extends from information and resources to connecting you to others with similar experiences.

We are here in the days, weeks, months and years following your loss as your CoHD companion for life.


We understand sometimes, it is not what you give, but the stress and the worry you can take away that matters most. That’s why HeartKids, provides practical and emotional support for parents, carers and families in hospital and in the community.

Support Services

The HeartKids Helpline offers support and guidance to those impacted by Childhood-onset Heart Disease, including families, caregivers, health professionals, and anyone seeking information or referrals. Our team is here to listen and assist without judgment, ensuring everyone feels supported.

You can call the Helpline to access support and information about:

  • Information and education resources on CoHD
  • Peer support programs in your area
  • Telephone and online support groups
  • Professional mental health support
  • Information regarding government subsidies for travel and accommodation
  • What you need to know when preparing for a hospital stay or treatment
  • Referrals to relevant services

HeartKids dedicated mental health services are designed to support your emotional and psychological needs through:

  • Individual or Family Counselling: Tailored sessions to help you cope with the challenges of CoHD, offering support and strategies for emotional resilience.
  • Online Hearts and Minds Program: A supportive online discussion group to connect with others, share experiences, and learn from collective wisdom.
  • Navigating Your CoHD Journey Workshops: Online workshops providing practical advice and insights to help manage the complexities of living with CoHD.


Find strength, understanding, and connection within our vibrant HeartKids community. Connect with support groups and local events specially for those experiencing grief and loss. Explore the opportunities below to join the HeartKids community, where you can share, heal, and find understanding in the company of those who understand.


Join us for social meetups, family fun days, and support groups near you. Experience a supportive community environment where you can connect with peers, access expert knowledge, and find resources to empower your journey. Explore our events calendar and register today to get involved!

See Events


Everyone directly impacted by CoHD needs someone to champion them. If you are looking for a way to connect with other adults with CoHD whilst giving back, volunteering with HeartKids is a rewarding way to help others in our community.
Join our more than 800 volunteers across Australia and become a champion of the heart. HeartKids is able to provide quality services to children, young people, and adults with CoHD with the help of our HeartKids volunteers.

Why Volunteer With HeartKids?

At HeartKids, we ensure volunteering with us is a rewarding and meaningful experience. We pair you with a role that suits your skills, background, and reason for volunteering and provide all necessary information and training. You get the opportunity to give back and connect with the community and assist other young people, kids, and families in need.

See All Volunteer Events

Information and Resources

Discover reliable information and resources of every kind to help through the grief, emotions, and challenges that come with the loss of a child, family member, or friend to CoHD.

Fact Sheets

Concise and informative resources tailored for individuals and families dealing with the emotions of loosing someone to CoHD.

Resource Library

HeartKids’ Resource Library is a one-stop-shop of information and support materials for bereaved families and friends.


In this special CHD Real Talk episode, we dive into a topic that touches the hearts of many within the CoHD community: Bereavement.

My Family’s Journey Of Congenital Heart Disease...

Dom’s message for anyone experiencing grief is simple: You are not alone.

How Cardiomyopathy Impacted My Family...

In this episode Matt talks about the complexity of navigating diagnoses, bereavement, and the strength of his sons.

What It’s Really Like to Have a Heart Kid in the Family...

‘MALACHY’ the book is about the life of my HeartKid Malachy. In the book I try to show the real impacts of childhood heart disease on our whole family.

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