From The Heart: The HeartKids Podcast

HeartKids
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Join us as we explore stories of Australians impacted by childhood-onset heart disease (CoHD) - including congenital heart disease. We'll tackle the big issues - what it's like receiving a new diagnosis, preparing for open-heart surgery, looking after your mental health, and much more. The show features cardiologists and experts sharing their knowledge about the topics you want to know more about. This show is for anyone impacted by CoHD - parents, carers, family members, friends, and those of us living with CoHD. Your hosts are Rachael Knowles, a young adult with CoHD, and Sami Glastonbury, a mother of two children with CoHD.From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for all people impacted by CoHD. 

  1. 100 Episodes of From the Heart: Stories, Lessons and What’s Next

    DEC 12

    100 Episodes of From the Heart: Stories, Lessons and What’s Next

    This special 100th episode brings Sammy and Rachel together to revisit the moments, people and insights that have defined From the Heart. They explore the power of shared stories, the evolving experiences of heart parents and heart adults, and how community connection continues to shape the podcast. A warm, open conversation that celebrates the stories that brought us here — and those still to come. HEARTKIDS From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease. For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au COPYRIGHT All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission. Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright. CREDITS Hosts and Guests: Rachel Knowles & Sami Glastonbury Producer: Becky Oakley

    32 min
  2. Navigating Life and Health: Brodie’s Journey Through Two Heart Transplants

    NOV 22

    Navigating Life and Health: Brodie’s Journey Through Two Heart Transplants

    In this episode of the HeartKids Podcast, host Rachel Knowles speaks with 20-year-old Brodie and his mum, Annie, from Tasmania. Brodie has lived with childhood-onset heart disease and has undergone not one, but two heart transplants — the first during the height of COVID-19, and the second just last year. Brodie and Annie share the early signs that something wasn’t right, the frightening dash from regional Tasmania to Melbourne for lifesaving treatment, and the long months spent away from home due to border closures and hospital restrictions. They reflect on the intense isolation of that time, the power of connection with other heart families, and the mix of courage, humour and resilience that carried them through. Now 18 months on from his second transplant, Brodie talks about recovery, returning to everyday life, and the simple routines that help him stay well. Annie offers insight into the experience of parenting through uncertainty, the strength she discovered along the way, and the support they received from HeartKids when their world was suddenly turned upside down. HEARTKIDS From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease. For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au COPYRIGHT All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission. Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright. CREDITS Host: Rachel Knowles Guests: Annie and Brodie Whelan Producer: Becky Oakley

    28 min
  3. Tanya Hall from Hearts4heart: The Power of the Patient Voice

    NOV 8

    Tanya Hall from Hearts4heart: The Power of the Patient Voice

    Tanya Hall, CEO and founder of Hearts4heart and member of the World Heart Federation Board, joins us to share how lived experience can reshape care, policy and community. Diagnosed in infancy and navigating a complex journey that includes open heart surgery, arrhythmias, ablations and a pacemaker, Tanya describes the isolation that led her to start Hearts4heart in 2011 and how it has grown into a national organisation supporting, educating and empowering adults with heart conditions. We discuss the moment her story shifted a decade of stalled advocacy in Parliament, why patient voices must be equal stakeholders in health decisions, and how collaboration across clinicians, government and community drives real change. Tanya also reflects on equity challenges across Australia and globally, the rise of patient led advocacy, and her hope for a future where no one feels alone on their heart health journey. HEARTKIDS From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease. For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au COPYRIGHT All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission. Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright. CREDITS Host: Sami Glastonbury Guest: Tanya Hall Producer: Becky Oakley

    41 min
  4. Shaping Better Care Through Education with Mark Edmonds

    OCT 22

    Shaping Better Care Through Education with Mark Edmonds

    In this episode, host Sami Glastonbury speaks with Mark Edmonds, Education Project Coordinator at HeartKids, about the power of co-design and education in transforming care for people living with childhood-onset heart disease.   Mark shares how his background in neurophysiology and teaching has shaped his approach to developing national education modules for healthcare professionals, ensuring care is holistic, evidence-based, and grounded in lived experience.   Together, they explore how education is helping clinicians across Australia better understand the complexities of lifelong heart conditions, strengthen communication and mental health awareness, and ultimately improve outcomes for families. HEARTKIDS From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease. For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au COPYRIGHT All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission. Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright. CREDITS Host: Sami Glastonbury Guest: Mark Edmonds Producer: Becky Oakley

    37 min
  5. Supporting Heart Families in WA and Beyond with Natasha D'Souza

    OCT 4

    Supporting Heart Families in WA and Beyond with Natasha D'Souza

    In this episode, host Sami is joined by Natasha D'Souza, one of our dedicated Family Support Coordinators in Western Australia.  Drawing on her own experience as a heart parent, Tash shares how she and the WA team walk alongside families through hospital stays, unexpected admissions, and the life-changing reality of having to travel interstate for cardiac care.  From practical tips on preparing for the journey, to the compassion of support that stretches across states and siblings at home, Tash opens up about a decade of standing with families through their hardest moments — and why she still loves this role every single day. HEARTKIDS From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease. For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au COPYRIGHT All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission. Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright. CREDITS Host: Sami Glastonbury Guest: Natasha D'Souza Producer: Becky Oakley

    34 min
  6. CHD, RHD and Cultural Identity with Heart Mum Maria Tass

    SEP 20

    CHD, RHD and Cultural Identity with Heart Mum Maria Tass

    In this episode of From The Heart, Angela Webb, our Aboriginal and Torres Strait Islander Community Engagement Manager, speaks with Maria Tass and her twin sons, Benson and Albert, from Mackay, Queensland. Born with congenital heart conditions in 2015 and later diagnosed with rheumatic heart disease, the boys went through multiple surgeries and were among the first patients at Queensland Children’s Hospital. Maria reflects on the challenges of caring for twins with complex needs, the vital role of culture and community, and the support she received from HeartKids. Benson and Albert also share their own voices, talking about living with ongoing treatment and the strength they find in sport, family and cultural identity. Their story is one of resilience, connection and hope for other families navigating CoHD and RHD. HEARTKIDS From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease. For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au COPYRIGHT All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission. Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright. CREDITS Host: Angela Webb Guest: Maria, Benson and Albert Tass Producer: Becky Oakley

    25 min
  7. Fontan Surgery, ANZFAC and Lived Experience with Jonathan Mackley

    SEP 4

    Fontan Surgery, ANZFAC and Lived Experience with Jonathan Mackley

    In this episode of From the Heart, Jonathan Mackley shares his journey from being born with a complex heart condition and undergoing one of the earliest Fontan surgeries, to becoming a strong voice in the HeartKids community.  Jonathan talks about growing up in the 70s and 80s, the shift from limited supports to today’s networks, and how connection with others living with congenital heart disease transformed his perspective.  He reflects on advocacy, co-founding the Australian and New Zealand Fontan Community, and why lived experience is so vital in shaping research, healthcare, and everyday choice. HEARTKIDS From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease. For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au COPYRIGHT All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission. Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright.

    1h 5m
  8. Hugo and Louise Taheny: Sport, Advocacy and Life with CHD and Down Syndrome

    AUG 21

    Hugo and Louise Taheny: Sport, Advocacy and Life with CHD and Down Syndrome

    In this episode of From the Heart, host Sami Glastonbury speaks with world champion athlete and health ambassador Hugo Taheny and his mum, Louise. Hugo is a Heart Kid living with Down syndrome, along with vision and hearing impairments. His journey has been shaped by resilience, family, and community. Hugo shares how sport became his passion, earning him the nickname “Rockstar” and leading him to represent Australia on the world stage. Louise reflects on Hugo’s early health challenges, the strength of rural community support, and the importance of inclusion in both healthcare and sport. Together, they discuss the barriers that still exist, their advocacy for more inclusive pathways, and Hugo’s powerful message: use your voice, hold your head high, and help create a world where everyone belongs. HEARTKIDS From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for people affected by childhood-onset heart disease. For support, information or guidance on your CoHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au COPYRIGHT All content on this podcast is subject to copyright and may not be reproduced, repurposed, republished, or copied, in any form, without permission. Repurposing or republishing content from this podcast, even with credit and acknowledgement to the creators, host, and guest, does not provide an exemption to this copyright.

    47 min
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About

Join us as we explore stories of Australians impacted by childhood-onset heart disease (CoHD) - including congenital heart disease. We'll tackle the big issues - what it's like receiving a new diagnosis, preparing for open-heart surgery, looking after your mental health, and much more. The show features cardiologists and experts sharing their knowledge about the topics you want to know more about. This show is for anyone impacted by CoHD - parents, carers, family members, friends, and those of us living with CoHD. Your hosts are Rachael Knowles, a young adult with CoHD, and Sami Glastonbury, a mother of two children with CoHD.From The Heart is brought to you by HeartKids, the only national not-for-profit solely focused on supporting and advocating for all people impacted by CoHD. 

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