Claim OwnershipFrom The Heart: The HeartKids Podcast
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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.
101 Episodes
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In this episode, host Rachel Knowles speaks with Holly Cuthbert, a 25-year-old living with childhood-onset heart disease from Busselton in Western Australia. Holly shares her experience growing up with a complex heart condition and undergoing four open-heart surgeries, including three during her teenage years. She reflects on the challenges of balancing school, friendships and health, the impact of medical trauma, and the importance of connection through the HeartKids community. Now working a...
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 sole...
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 hom...
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 discu...
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 explor...
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 a...
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 ro...
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 N...
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 st...
In this episode of From the Heart, host Sami Glastonbury sits down with Dr Stephanie Perrier, Paediatric and Congenital Cardiac Surgeon at the Royal Children's Hospital Melbourne. From her early training in France to performing life-changing surgeries in Australia, Stephanie shares her path into cardiac surgery and why she still sees the heart as magical. They explore what a typical surgery day looks like, who’s in the room during an operation, and what families can expect before, during and ...
In this episode of From The Heart Sami chats with Emily Hayes, a speech pathologist and feeding specialist who works closely with babies and young children, including those who’ve had surgery or spent time in intensive care. Listen as Sami and Emily discuss nasogastric (NG) tubes, feeding difficulties, speech delays as well as what to expect during recovery, how to support your child at home, and when it might be time to seek extra help. Emily Hayes Emily Hayes is the founder of SA-bas...
In this episode of 'From The Heart', our host Rachael chats to Annabel Turner - a young heart adult who has tricuspid artresia. Listen as Rachael and Annabel chat about having a heart condition has not stopped Annabel from living a full, rich and exciting life. 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 ...
In this episode of 'From The Heart', our host Rachael chats to Stacey Micallef - a sexologist and relationship & trauma counsellor based in Geelong, Victoria. Listen as Rachael and Stacey chat about how CoHD can impact sexual health and relationships, and the strategies you can employ to build healthy, fulfilling sexual relationships. 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...
In this episode of 'From The Heart', our host Rachael chats to clinical psychologist Carlye Crank about mental health, medical trauma and the unique ways in which physical health can impact your mental health. 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...
In this special episode for Reconciliation Week, Angela Webb, HeartKids’ Aboriginal and Torres Strait Islander Community Engagement Manager, has a yarn with Tanika Parker, RHD Nurse Navigator, and Genavie Tabuai, Health Worker Coordinator for Maternal, Child and Family Health Programs, both from Torres and Cape Hospital and Health Service. Tanika and Genavie speak about the realities of delivering care across remote communities in Far North Queensland, with a strong focus on preventing and ma...
In this episode of "From the Heart," join our host, Sami, for a conversation with Mitch McGovern. Mitch is a football player with Carlton, and a HeartKids Ambassador. Sami and Mitch chat about Mitch's connection with CoHD, and how his trajectory changed after his best friend, Logan, passed away due to complications with his condition. 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 c...
In this episode of "From the Heart," join our host, Sami, for a conversation with Dr Shannon Schedlich. Shannon joins the podcast this episode, to chat with Sami about strengthening family units, and promoting nuanced support for all members. Shannon shares critical insights in acknowledging emotions, allowing space and an opportunity for siblings to share time with parents, and the significance of a siblings' understanding of their brother or sister's disability or chronic health con...
In this episode of "From the Heart," join our host, Sami, for a conversation with Curtis McGrath. Curtis is an Australian Paralympic gold medalist in paracanoe who lost both his legs while serving as a combat engineer in Afghanistan. His extraordinary evolution from soldier to Paralympic icon has inspired millions worldwide, with his journey taking on new meaning in 2024 when he and his wife Rachel welcomed their son Monty, born with transposition of the great arteries (TGA), adding a...
In this episode of "From the Heart," join our host, Sami, for a conversation with Mahan Ahmadiram, an adult navigating her life with CHD, with CH-FIT, community, and exceptional strength. Sami and Mahan discuss the significant journey Mahan and her family have experienced across several countries, and the many surgeries and supports that have bolstered her resolve and strength to this day. Mahan has recently volunteered at a HeartKids camp, and is actively involved in the CH-FIT program off...
In this episode of "From the Heart," join our host, Sami, for a conversation with Cindy Hutchison. Cindy and Sami chat about Cindy's extraordinary experiences with supporting her daughter Maddi, and grandson York, through their exceptionally challenging heart journey. Cindy shares incredible insight as to support and routines she offered, and the ways in which the whole family rallied around their newest member. Content Warning: This episode contains some discussion regarding termination fo...
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