Parents and Carers
From first diagnosis to navigating treatment and life with a child living with childhood-onset heart disease (CoHD).
Find relevant information, resources, support services and community connection for you as a parent or carer of someone with CoHD.
المعلومات والموارد
可用資訊和資源
impormasyon at mapagkukunan na magagamit
जानकारी और संसाधन उपलब्ध हैं
Informazioni e risorse disponibili
可用信息和资源
उपलब्ध जानकारी र स्रोतहरू
ਜਾਣਕਾਰੀ ਅਤੇ ਸਰੋਤ ਉਪਲਬਧ ਹਨ
habari na rasilimali zilizopo
thông tin và nguồn lực sẵn có
Remember, You’re Not Alone
Finding out that your child or unborn baby has a heart condition can be overwhelming. But it’s important to understand you are never alone in navigating life with childhood-onset heart disease (CoHD).
Between 2400 and 3000 Australian babies are born with congenital heart disease (a form of CoHD) each year. And whilst there is no known cure for CoHD, improvements in treatment options mean that 95% of children will survive into adulthood.
At HeartKids, we’ve been providing support for parents and families on their CoHD journeys for over 40 years. Whether that support is pointing you in the direction of the next best steps or taking care of life’s little things, were here to ensure you can focus on what matters most.
Antenatal
Access comprehensive information and resources on navigating your baby’s antenatal CoHD diagnosis during pregnancy.
Babies, Infants and Children
Enrich your little one’s CoHD journey from the earliest steps with supportive information and resources from birth to childhood.
School Children
Find and access relevant information for parents and carers to help children with heart conditions prepare for starting school.
Resources for Teens
Transitioning from childhood to life as a young adult is an important step in your child’s CoHD journey. Find tailored resources for teenagers.
Support
We understand sometimes it’s 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 and Therapeutic Services
- Support Services
- Community Support
- HeartKids Helpline
- Bereavement Support
- HeartKids Mental Health Services
- Early Childhood Programs
HeartKids have support staff located in hospitals across Australia, providing in-hospital or cardiology clinic visits to families when they are at their most vulnerable. Our team is made up of caring professional staff, including several heart parents.
When you and your loved ones need to go to hospital in an emergency or for treatments, our HeartKids Support Coordinators provide practical, emotional, and guiding support to assist in meeting your immediate needs while you navigate your new circumstances. We want you to be supported and well-informed throughout your healthcare journey.
HeartKids offer:
- Direct support from a HeartKids Support Coordinator
- Education and information resources
- Mental health support via HeartKids and external mental health supports
- HeartKids Helpline services, five days a week
- In-hospital events and morning teas
HeartKids are here to support you at every step of your journey, no matter where you are. Our teams are ready to help you figure out what comes next after leaving the hospital, navigate daily life, and face any challenges that come your way.
For families and individuals managing CoHD outside the hospital, HeartKids offers:
- Check-ins and support from a HeartKids Support Coordinator
- Mental health support
- Access to the HeartKids Helpline, available five days a week
- Customised resources and information
- Expert referrals to the right 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
Our bereavement support extends to all individuals and families experiencing the loss of a loved one to CoHD. The HeartKids team provide non-judgmental listening, information and resources, professional mental health support referrals, and face to face support sessions across major Australian cities, as well as virtual opportunities for those across the country/in rural and remote settings. We also facilitate access to specialist grief support, and host support groups and events to connect those with shared experiences. Whether your loss is recent or occurred years ago, HeartKids is here to ensure you never have to walk this path alone, offering support and resources every step of the way.
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.
HeartKids Early Childhood Intervention Programs are based on the Early Learning Years Framework and facilitated by an Occupational Therapist. With specialised assistance, parents are equipped to support their child’s neurodevelopmental milestones, fostering their child’s development, building resilience, and preparing them to be on parity with their peers when they start school.
The Early Childhood Intervention Programs focus on infants (0-2), preschoolers (2-4) and those preparing to start school, (4 plus).
To find out which programs are in your local area contact the HeartKids Helpline.
Connect
Find strength, understanding, and connection within our vibrant HeartKids community. We can help connect you to support groups, nearby events and opportunities to join us as a volunteer or fundraiser.
HeartKids Support Groups
Embrace a space where your experiences, challenges, and triumphs are met with kindness and understanding from other parents and carers just like you.
Find a Support Group in Your State
Events
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!
Volunteer
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.
Campaigns and Appeals
There are many ways you can connect with HeartKids and help change the lives of others impacted by CoHD. Join an upcoming campaign or appeal to help raise awareness and funds for HeartKids to continue our transformative work with the community.
Our Major Campaigns
Newsletter
Information and Resources
Videos
Find useful and accessible videos designed to help everyone understand, manage, and thrive with CoHD.
Fact Sheets
Concise and informative resources tailored for adults for all stages of their CoHD journeys.
Resource Library
HeartKids’ Resource Library is a one-stop-shop of information and support materials for adults and kids with CoHD.
From the Heart Podcast
Explore the ‘From the Heart’, HeartKids’ podcast offering insights into living life well with CoHD.
