From the Heart: Recent Episodes
HeartKids
Join us as we explore stories of Australians impacted by congenital or childhood heart conditions. 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. We'll also talk to cardiologists and experts. This show is for anyone impacted by CHD. 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 CHD. Your hosts are Rachael Knowles and Sam Stolberg, two young Australians who live with CHD.
In this special episode of From the Heart, HeartKids CEO Sami Glastonbury swaps seats with Heart Dad, ambassador and broadcaster Simon Reeve, who steps in to ask the questions.
Simon shares the story of his son Sam, who was diagnosed with transposition of the great arteries shortly after birth, and reflects on the fear, uncertainty and hope that shaped their family’s early journey.
From there, the conversation turns to Sami’s own experience as a heart mum and the path that led her to become CEO of HeartKids. Together, they talk about what support looks like for families today, the challenges that still exist, and why greater awareness of childhood-onset heart disease matters.
They also explore the transition from heart kid to heart adult, the emotional impact of growing up with a heart condition, and the work still needed to make sure families feel supported at every stage.
What does it mean to move from children's cardiac care into the adult healthcare system, and how can young people feel confident and empowered through the process?
In this episode of From the Heart, host Rachel Knowles sits down with Nurse Dr Mary Tallon, Clinical Nurse Specialist in Cardiology at Perth Children's Hospital and a contributor to the Australian Standards of Care for Childhood-Onset Heart Disease. Together, they explore the transition to adult care, why it should begin long before a young person turns 18, and how families, healthcare teams and communities can work together to support independence and lifelong heart health.
Mary shares practical advice for young people and parents, discusses the importance of understanding your own heart story, and explains how confidence, connection and self-advocacy can make all the difference during this important life stage.
Whether you're preparing for transition yourself, supporting a young person, or simply want to better understand the journey, this conversation offers practical guidance, reassurance and a hopeful look at what comes next for young people living with childhood-onset heart disease.
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 as a social worker supporting teenagers, Holly discusses how her lived experience has shaped the way she supports others navigating their own challenges.
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
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
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
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
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
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
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.
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.
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 after their child’s surgery. Stephanie also shares insights into fast-track recovery, the impact of small changes in care, and the potential of data to improve future outcomes.
This is a warm, honest and informative conversation for anyone navigating childhood-onset heart disease or wanting to understand what happens behind the theatre doors.
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.
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-based Hayes Speech Pathology. Established in 2015, Hayes Speech Pathology has a focus on paediatric feeding, using practical methods to support children and empower their families to overcome eating barriers.
hayessp.com.au
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
Guests: Emily Hayes
Producer: Becky Oakley
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 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: Rachael Knowles
Guests: Annabel Turner
Producer: Becky Oakley
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 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
Stacey Micallef
From her practice, Every Body Sexology, Stacey Micallef works with those seeking healthy connections with self and/or others. Stacey specialises in resolving painful sex and other pelvic pain issues, resolving sexual, birth and medical distress/trauma and working with the LGBTIQASB+ community.
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: Rachael Knowles
Guests: Stacey Micallef
Producer: Becky Oakley
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 432 785 or visit the website at https://www.heartkids.org.au
Carlye Crank
Carlye is the principle practitioner and director of Rise Psychology. She is a registered Clinical Psychologist who specialises in assessment and treatment of a broad range of mental health conditions. She treats a broad range of conditions including depression, anxiety, trauma, attachment and relationship difficulties and the psychological impact of chronic health conditions.
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: Rachael Knowles
Guests: Carlye Crank
Producer: Becky Oakley
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 managing rheumatic heart disease (RHD). They discuss the importance of culturally safe care, early intervention, and empowering health workers to lead conversations in their own communities.
They share what’s working, like one-on-one health promotion, outreach programs, and practical support for women who need to travel off Country to access care. They also speak openly about the gaps that still exist, including limited access to dental care under travel policies, and the need for better coordination across services.
This episode offers an honest look at the day-to-day work of responding to RHD and other health issues in community. It shows how real change comes from listening, working alongside mob, and making space for community-led solutions.
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
Guests: Tanika Parker and Genavie Tabuai
Producer: Becky Oakley
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 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: Mitch McGovern
Producer: Melissa Clarke
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 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 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
SIBLINGS AUSTRALIA
Siblings Australia is committed to improving the support available for siblings of children and adults with chronic conditions including disability, chronic illness and mental health issues.
Access more information on their website here
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: Dr Shannon Schedlich
Producer: Melissa Clarke
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 another chapter of resilience to their family's remarkable story.
Sami and Curtis chat through the McGrath family journey with CoHD, while employing incredible determination in the run up to Curtis' participation in the Paris Paralympics.
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: Curtis McGrath
Producer: Melissa Clarke
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 offering critical exercise support to those with CoHD.
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
CREDITS
Host: Sami Glastonbury
Guest: Mahan Ahmadiram
Producer: Melissa Clarke
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 for medical reasons. If you choose to listen, please listen in a safe space and remember you can pause if you need to.
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
THROUGH THE UNEXPECTED
If you have received an unexpected prenatal diagnosis, or are seeking support relating to TFMR experiences, the below links may offer some resources or support groups:
Through the Unexpected
Pink Elephants
Red Nose Grief and Loss
CREDITS
Host: Sami Glastonbury
Guest: Cindy Hutchison
Producer: Melissa Clarke
Welcome to From the Heart: The HeartKids Podcast, Season 4.
In this episode of "From the Heart," join our host, Sami, for a conversation with Chloe Peck, a young adult who is a sibling to a heart teen.
Join Sami and Chloe as they discuss the complexities of a heart journey, for siblings and extended family members, and the extraordinary efforts and routines Chloe's family implemented to bolster their whole support network.
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
CREDITS
Host: Sami Glastonbury
Guest: Chloe Peck
Producer: Melissa Clarke
Welcome to From the Heart: 2024 Wrapped!
As we have closed off 2024 and into 2025, we're bringing you some fan favourite episodes of From the Heart, season 3.
Here is Encore #5 - Erin Ferguson
In this episode of From the Heart, Tahnee Jash is joined by Erin Ferguson, a dedicated paediatric Rheumatic Heart Disease (RHD) clinical nurse consultant from the Happy Heart Clinic in Far North Queensland.
Erin discusses her team's efforts to improve healthcare experiences for young patients with RHD, focusing on their practical and supportive approaches.
Learn about the strategies that are making a difference in providing consistent and equitable care to both RHD and CoHD patients across Australia.
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
CREDITS
Host: Tahnee Jash
Guest: Erin Ferguson
Producer: Becky Oakley
Welcome to From the Heart: 2024 Wrapped!
As we have closed off 2024 and looking into 2025, we're bringing you some fan favourite episodes of From the Heart, season 3.
Here is Encore #4 - Danielle Green
Danielle is a mother to two children, Sonny and Airlie, who have both passed away due to a rare genetic condition known only as PPA2.
Sami and Danielle chat about Danielle and her husband Leon's journey with this extremely rare condition, advocating for genetic testing and counselling, and the importance of family and community during the most difficult of times.
A content warning: This episode will touch on grief, and bereavement that some may find challenging.
If you choose to listen, please listen in a safe space and remember you can pause if you need to.
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
OUR RARE LIFE
Danielle and Leon run Our Rare Life, a group to raise awareness and platform rare genetic conditions.
Head to their instagram page here, and be sure to check their link in bio for more resources and information about rare conditions.
CREDITS
Host: Sami Glastonbury
Guest: Danielle Green
Producer: Melissa Clarke
Welcome to From the Heart: 2024 Wrapped!
As we close off the end of this year, we're bringing you some fan favourite episodes of From the Heart, season 3.
Here is Encore #3 - Amber Adamson: Ask a Nurse
In this episode Rachael chats with Amber Adamson, a dedicated Clinical Nurse Consultant at Prince Charles Hospital, who specialises in Adult Congenital Heart Disease.
Before the episode was recorded, we put out a call on social media for young people and adults to submit questions to be answered on air, and you responded with thoughtful topics and queries about navigating life and healthcare with a heart condition.
In this episode Amber is here to help, specifically addressing the concerns and questions of young people and adults, sharing her expertise, insights, and advice for managing your healthcare with confidence and independence.
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
CREDITS
Host: Rachael Knowles
Guest: Amber Adamson
Producer: Becky Oakley
Welcome to From the Heart: 2024 Wrapped!
As we close off the end of this year, we're bringing you some fan favourite episodes of From the Heart, season 3.
Here is Encore #2 - Kate Strickland, Child Life Therapist.
Kate is a Child Life Therapist, who works in the community with children - one of the first Child Life Therapists to work outside of a hospital framework.
Sami and Kate chat about how to prepare a child for surgery, what to expect, and how to process the event after families return home. Kate offers fantastic tips, resources, and information to anyone bolstering support around their HeartKid throughout their childhood.
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
HEALING HEARTS BEYOND
Kate owns and operates at Healing Hearts Beyond in Victoria.
Visit her website here for more information, resources, and guidance.
CREDITS
Host: Sami Glastonbury
Guest: Kate Strickland
Producer: Melissa Clarke
Welcome to From the Heart: 2024 Wrapped!
As we close off the end of this year, we're bringing you some fan favourite episodes of From the Heart, season 3.
Here is Encore #1 - Elijah's Story
Elijah, a proud Kamilaroi/Wiradjuri man, shares his remarkable journey living with childhood-onset heart disease (CoHD) with our host, Tahnee Jash.
Elijah works as an Indigenous Liaison Officer for the Department of Infrastructure in Meanjin.
Diagnosed with pulmonary atresia with VSD at birth, Elijah has faced numerous challenges and undergone several surgeries, including a significant operation two years ago to replace three leaking valves.
This episode showcases resilience, the importance of self-care and the power of family support.
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
CREDITS
Host: Tahnee Jash
Guest: Elijah Hill
Producer: Becky Oakley
In this episode of "From the Heart," join our host, Sami, for a catch-up conversation with podcast producer, Mel.
Mel and Sami chat about Sami's current pathway to seeking a diagnosis for her daughter, as well as updates from all the incredible events and outcomes from HeartKids for the year.
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
CREDITS
Host: Sami Glastonbury
Producer: Melissa Clarke
In this episode of "From the Heart," join our host, Sami, for a conversation with Amy Heafield.
Many families who have spent time at the Royal Children's Hospital in Melbourne will have crossed paths with Amy; Amy is a Support Coordinator with HeartKids, and a parent to a heart teen.
Amy and Sami chat about what HeartKids Support looks like, the joys of supporting teens on teen camp, and considerations in supporting a heart kid, as they transition through childhood, to their teen years, and beyond.
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
CREDITS
Host: Sami Glastonbury
Guest: Amy Heafield
Producer: Melissa Clarke
In this episode of "From the Heart," join our host, Rachael, for a conversation with Jaden Dixon.
Jaden is a 29-year-old from Brisbane who was born with Hypoplastic Left Heart Syndrome (HLHS). Jaden studied social work and now works for Queensland Health.
Listen in as Rachael and Jaden discuss their heart journeys, Jaden's involvement with HeartKids, the importance of connecting with the peer community, finding your people, and living life with a heart 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 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
CREDITS
Host: Rachael Knowles
Guest: Jaden Dixon
Producers: Becky Oakley, Melissa Clarke
In this episode of "From the Heart," join our host, Sami, for a conversation with Wes McDougall.
Wes is a heart adult, who has a stunning career as a racing engineer – now working with Supercheap Auto as chief engineer, as well as an instructional coach for his own business, the Complete Race Driver.
Wes and Sami connect about his experiences growing up as a heart kid, surgery as an adult, and pursuing an exciting career.
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
THE COMPLETE RACE DRIVER@the_complete_race_driverHead to Wes' site, or instagram page to learn more about racing engineering!
CREDITS
Host: Sami Glastonbury
Guest: Wes McDougall
Producers: Melissa Clarke
In this episode of "From the Heart," join our host, Rachael, for a conversation with Audrey Keillor.
Audrey is a 19-year-old heart adult, who was born with Tetralogy of Fallot.
Audrey and Rachael connect over their experiences as young adults with CHD, transitioning to adult care, and the importance of community and connecting with peers.
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
CREDITS
Host: Rachael Knowles
Guest: Audrey Keillor
Producers: Becky Oakley, Melissa Clarke
In this episode of "From the Heart," join our host, Sami, for a conversation with Danielle Green.
Danielle is a mother to two children, Sonny and Airlie, who have both passed away due to a rare genetic condition known only as PPA2.
Sami and Danielle chat about Danielle and her husband Leon's journey with this extremely rare condition, advocating for genetic testing and counselling, and the importance of family and community during the most difficult of times.
A content warning: This episode will touch on grief, and bereavement that some may find challenging.If you choose to listen, please listen in a safe space and remember you can pause if you need to.
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
OUR RARE LIFEDanielle and Leon run Our Rare Life, a group to raise awareness and platform rare genetic conditions.
Head to their instagram page here, and be sure to check their link in bio for more resources and information about rare conditions.
CREDITS
Host: Sami Glastonbury
Guest: Danielle Green
Producer: Melissa Clarke
In this episode of "From the Heart," join our host, Sami, for a conversation with Kate Strickland. Kate is a Child Life Therapist, who works in the community with children - one of the first Child Life Therapists to work outside of a hospital framework.
Sami and Kate chat about how to prepare a child for surgery, what to expect, and how to process the event after families return home. Kate offers fantastic tips, resources, and information to anyone bolstering support around their HeartKid throughout their childhood.
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
HEALING HEARTS BEYONDKate owns and operates at Healing Hearts Beyond in Victoria.
At the time of this episode being published, Kate is offering support sessions around Navigating and Supporting Your Infant's Medical Journey that listeners are able to register for through this link: here
CREDITS
Host: Sami Glastonbury
Guest: Kate Strickland
Producer: Melissa Clarke
In this episode of From the Heart, host Rachael chats with Emma Psaros, a 25-year-old who has grown up with congenital heart disease (CHD). Emma shares her journey of managing her heart condition while leading a balanced and full life.
Emma discusses her transition from paediatric to adult care, the importance of open communication with healthcare professionals, and the support she receives from family and friends. She highlights her strategies for managing mental health, including therapy and having a strong support system.
Emma also talks about her love for Pilates and how she adapts her fitness routine to suit her needs. She offers insights on navigating the workplace with a heart condition and the importance of being upfront with employers about her health.
The conversation touches on family planning with a heart condition, emphasising the need for being proactive and informed.
Tune in for an inspiring discussion that provides valuable insights for those living with CHD or supporting someone who does.
Disclaimer: This podcast deals with some heavy topics. If you or someone you love needs support, the HeartKids Helpline offers advice and guidance for those impacted by childhood heart disease. Call 1804 32785 or visit heartkids.org.au for more information. The content of this podcast is not a substitute for professional medical advice. Always consult your healthcare provider for matters affecting your health or your family's health.
In this episode of From the Heart, Rachael sits down with Laura Achilles, a heart adult living with congenital heart disease (CHD). Laura, an actor in her 30s, shares her journey of growing up with CHD, moving from the UK to Australia, and navigating a new healthcare system on her own. She opens up about the challenges and triumphs of managing her mental health, dealing with grief after losing a friend, and undergoing significant surgery without her family nearby.
Laura also discusses her short film "Wild Heart," reflecting on her experiences and preparing to share her story with the world. This rich conversation explores the complexities of adult life with CHD, offering insights and inspiration for anyone facing similar challenges.
Join us for an insightful and emotional episode that highlights resilience, personal growth, and the power of storytelling.
Join our host Rachael Knowles as she chats with Jeremy Richardson, an adventurous adult in his 30s living with truncus arteriosus. Jeremy leads an active life filled with travel, a passion for the snow fields, and has a family history connected to the origins of HeartKids.
Tune in to hear about Jeremy's journey from growing up in South Australia to moving overseas to pursue a videography career, filming snowboarding in Canada! He shares his experiences with multiple heart surgeries, the importance of mental health, and the pivotal role his parents played in establishing HeartKids SA.
Hear how Jeremy navigates life with a congenital heart condition and his invaluable advice for other heart adults. Whether you're a heart kid, a parent, or just looking for some inspiration, Jeremy's story is a testament to living life to the fullest, no matter the challenges.
Don't miss this conversation packed with insights, encouragement, and a few laughs along the way.
In this episode of From the Heart, Elijah, a proud Kamilaroi/Wiradjuri man, shares his remarkable journey living with childhood-onset heart disease (CoHD) with our host, Tahnee Jash.
Elijah, now 24, works as an Indigenous Liaison Officer for the Department of Infrastructure in Meanjin (Brisbane). Diagnosed with pulmonary atresia with VSD at birth, Elijah has faced numerous challenges and undergone several surgeries, including a significant operation two years ago to replace three leaking valves.
Join us as Elijah discusses the physical and emotional aspects of growing up with a heart condition, his experiences transitioning from pediatric to adult healthcare, and the critical support systems that helped him along the way. He also shares his unique perspective on health, his strong connection to his Aboriginal heritage, and his aspirations to be a leader and advocate for Aboriginal people.
This episode showcases resilience, the importance of self-care and the power of family support.
In this episode of From the Heart, Tahnee Jash is joined by Erin Ferguson, a dedicated paediatric Rheumatic Heart Disease (RHD) clinical nurse consultant from the Happy Heart Clinic in Far North Queensland. Erin discusses her team's efforts to improve healthcare experiences for young patients with RHD, focusing on their practical and supportive approaches. Learn about the strategies that are making a difference in providing consistent and equitable care to both RHD and CoHD patients across Australia.
In this episode, Rachael chats to Sarah Purdom, a wonderful heart adult who is not only navigating life with a heart condition (Transposition of the Great Arteries (DTGA) and pulmonary stenosis) but is also excelling in her academic and personal pursuits. Sarah is currently in her Honours year in Geology at the University of Tasmania, where she has been exploring the origins of gold within granite formations (wow)!
Beyond her academic achievements, Sarah manages part-time work while exploring in her passions for science fiction, outdoor activities, and video games. In today's episode, Sarah shares her heart journey story, providing a unique insight into how she manages her condition and wellbeing during this very busy time in her life!
CREDITS
Host: Rachael Knowles
Guest: Sarah Purdom
Producer: Becky Oakley
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
In this episode, meet CJ , a 17-year-old from Melbourne, Victoria, who shares his experiences of growing up with bicuspid aortic valve. Tune in to hear CJ's story, how he managed his surgeries, and finds positivity through art and support through friends and community.
CREDITS
Host: Rachael Knowles
Guest: CJ Gagliardi
Producer: Becky Oakley
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
Welcome to a very special episode of the HeartKids From The Heart. n this episode Rachael chats with Amber Adamson, a dedicated Clinical Nurse Consultant at Prince Charles Hospital, who specialises in Adult Congenital Heart Disease.
Before the episode was recorded, we put out a call on social media for young people and adults to submit questions to be answered on air, and you responded with thoughtful topics and queries about navigating life and healthcare with a heart condition. So, in this episode Amber is here to help, specifically addressing the concerns and questions of young people and adults, sharing her expertise, insights, and advice for managing your healthcare with confidence and independence.
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
CREDITS
Host: Rachael Knowles
Guest: Amber Adamson
Producer: Becky Oakley
In this episode of "From the Heart," join our host, Sami, for a conversation with Matt Tognini. Matt is the father of a heart kid, Alessandra, who was born with a complex congenital heart condition.
Sami and Matt chat about the impacts of flying across the country for heart surgery, the parent perspective of the process of transition from paediatric care to adult care, and supporting his heart kid adult as she prepares for upcoming surgery.
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
CREDITS
Host: Sami Glastonbury
Guest: Matt Tognini
Producer: Melissa Clarke
In this episode of "From the Heart," join our host, Sami, for a conversation with Missing School CEO Megan Gilmour.
Sami and Megan chat about the impact of periods of absence from school, for those with critical health concerns. Megan takes us through initiatives that Missing School can put in place, or connections to additional supports, that assist kids who are experiencing loneliness, and gaps in learning while away from the classroom.
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
MISSING SCHOOL1300 237 234Children should be seen and heard.
Read more about Missing School and their initiatives at their site https://missingschool.org.au/
CREDITS
Host: Sami Glastonbury
Guest: Megan Gilmour
Producer: Melissa Clarke
In this episode of "From the Heart," join our host, Sami, for a conversation with HeartKids CEO Lesley Jordan.
Sami and Lesley chat about congenital heart disease, as well as the term Childhood-onset Heart Disease (CoHD) and what this means. Lesley gives us a quick catch-up on all things CoHD for new listeners, and takes us through some exciting upcoming events.
Be sure to stick around and hear the Love Letters to the CoHD Community segment, where we play your dedications, shout-outs, and anonymous messages of love to those in the community, in acknowledgement of the significant population and unique journeys of those with Childhood-onset Heart Disease.
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
CREDITS
Host: Sami Glastonbury
Guest: Lesley Jordan
Producer: Melissa Clarke
This summer (in Australia!), we're bringing you some fan favourite episodes of From the Heart Season 2, 2023! Here is Encore #3 - Genetic Counselling with Laura Yeates.
Laura is a cardiac genetic counsellor and current PhD candidate with research projects focusing on inherited cardiomyopathy and arrhythmia. In this episode, Laura talks about what genetic counselling is, who can access it, and how genetic counselling is used to understand more about health conditions, and accessing the right supports around those conditions.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Laura Yeates
Producer: Melissa Clarke, Becky Oakley
This summer (in Australia!), we're bringing you some fan favourite episodes of From the Heart Season 2, 2023! Here is Encore #2 - Matt Nelson's Story
Matt has been touched by childhood heart disease (CHD) as both a husband and a father. Matt’s first wife Tina passed away in 2013 due to complications from hypertrophic cardiomyopathy. Two of Matt’s sons also live with this condition.
In this episode Matt talks about the complexity of navigating diagnoses, bereavement, and the strength of his sons.
Content Warning
This episode contains information about bereavement. Please listen in a safe space and remember you can pause if you need to.
If any of the information about bereavement brings up worry for you, please contact any of the below helplines for support
BeyondBlue
1300 22 4636
Available: 24/7
Griefline
1300 845 745
Available: 8am to 8pm Monday to Friday
Kids Helpline
1800 55 1800
Available: 24/7
Mensline
1300 78 99 78
Available: 24/7
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Matt Nelson
Producer: Isobel Pritchard-Davies, Melissa Clarke
This summer (in Australia!), we're bringing you some fan favourite episodes of From the Heart Season 2, 2023! Here is Encore #1 - Eve's Story
Eve is a 23-year-old from Melbourne who lives with a congenital heart condition. Eve is a keen skier, ice hockey player and cold water swimmer! In this episode, Eve talks about how having a heart condition has impacted her body image and relationship with her body, her journey to becoming more independent with her health care, and the importance of support networks.
LINKS
Join HeartKids' Instagram for teens and young people @youthzone_heartkids: www.instagram.com/youthzone_heartkids
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Eve Alexiadis
Producer: Isobel Pritchard-Davies
In this episode of "From the Heart," join our host, Rachel, for a special conversation with Jaidyn Stephenson, North Melbourne AFL Player, and dedicated HeartKids Ambassador. Rachel and Jaidyn discuss navigating his heart condition and achieving success in his AFL career. Tune in as Jaidyn shares insights into the special bond he has forged with HeartKids.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Jaidyn Stephenson
Producer: Becky Oakley
On this episode of From The Heart, we’re getting to know Monica Tolic – a heart teen from Adelaide who recently finished her last day of high school! With big goals in sight for her future, Rachael chats to Monica about growing up with a heart condition and managing through the highs chool years. Monica shares her thoughts on mental health, creating balance and becoming independent with her heart 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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Monica Tolic
Producer: Becky Oakley
In this episode of From the Heart, we're joined by Elle Pendrick, a HeartKid herself and member of our HeartKids Board. Elle is also the founder of Adulting Well - on a mission to empower and educate people with chronic illnesses. In this episode Elle discusses navigating the financial aspects of living with, or caring for someone, with a childhood heart condition.
For those new to From the Heart we highly recommend you check out an earlier interview we conducted with Elle on preparing for Open Heart Surgery.
For more information and tips, check out Elle's recently released Ultimate Surgery Success Guide.
Content note: This episode provides general ideas for navigating the financial aspects of living with a Childhood Heart Condition in Australia, but it does not provide financial advice. Everybody's situation is unique, so we strongly recommend you get independent financial advice.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Elle Pendrick
Producer: Becky Oakley
In this episode of From the Heart, we're joined by Tess Waterhouse who shares her remarkable journey of receiving a diagnosis of Congenital Heart Disease (CHD) at age 23. Tess shares her experience with open-heart surgery for her atrial septal defect (ASD) and reflects on her recovery process, coping strategies, and the crucial support networks that helped her. She offers valuable insights on self-advocacy and a message of hope and guidance for others facing a similar diagnosis.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Tess Waterhouse
Producer: Becky Oakley
This episode, Sami chats to Dr Gavin Wheaton about Rheumatic Heart Disease, and the Deadly Heart Trek.
Dr Wheaton is a paediatric cardiologist at Adelaide’s Women and Children’s Hospital, and part of the Deadly Heart Trek.
Deadly Heart Trek is a group of experienced doctors, local health workers and aboriginal leaders visiting communities across Australia to diagnose, treat and help prevent RHD, while learning and responding to the needs of communities.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit our website: https://www.heartkids.org.au
LINKS
Learn more about Rheumatic Heart Disease (RHD):
https://www.rhdaustralia.org.au/
Learn more about Deadly Heart Trek:
https://deadlyhearttrek.org/
CREDITS
Host: Sami Glastonbury
Guest: Dr Gavin Wheaton
Producer: Melissa Clarke
This episode, Sami chats to Ellen Mitchell about the impact of becoming a Heart Mum, and how she gives back to the CHD community.
Ellen is the Regional Community Coordinator for HeartKids in South Australia. Through her work, Ellen attends regional cardiac clinics, assists in facilitating community events, connecting peers across South Australia, and supporting the community in innovative ways.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit our website: https://www.heartkids.org.au
LINKS
Learn more about Two Feet and a Heartbeat:
https://www.twofeetheartbeat.org.au/
CREDITS
Host: Sami Glastonbury
Guest: Ellen Mitchell
Producer: Melissa Clarke
This episode, Sami chats to Dr Derek Tran, about exercise physiology, and supporting fitness for those with Congenital or Childhood-Onset Heart Disease (CHD)
Dr Tran is a lecturer at the University of Sydney School of Medicine and Senior Exercise Physiologist at the Department of Cardiology, Royal Prince Alfred Hospital.
Derek is also the co-coordinator of the world’s largest, and most inclusive CHD exercise clinical trials, called CH-FIT – striving to optimise exercise prescription and delivery for those with CHD.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit our website: https://www.heartkids.org.au
LINKS
Learn more about CH-FIT:
https://www.hri.org.au/our-research/clinical-research/optimising-exercise-prescription-and-delivery-in-congenital-heart-disease-the-congenital-heart-fitness-intervention-trial-ch-fit
CREDITS
Host: Sami Glastonbury
Guest: Dr Derek Tran
Producer: Melissa Clarke
This episode, Tahnee chats with Jayhrani Nicholls, a registered nurse and Aboriginal woman who works at Ngak Min Health, located on the Djarragun College campus in Gordonvale, Queensland. With a passion for empowering individuals to take control of their own health, Jayhrani has been dedicating her skills and expertise to supporting patients with Rheumatic Heart Disease (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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit our website: https://www.heartkids.org.au
LINKS
Learn more about RHD:
http://www.rhdaustralia.org.au
CREDITS
Host: Tahnee Jash
Guest: Jayrahni Nicholls
Producer: Becky Oakley, Melissa Clarke
In this episode, Rachael chats with Ahmad, a remarkable 17-year-old who faced a life-saving heart transplant during the pandemic. His journey is a testament to unwavering resilience, overcoming challenges which included a leg amputation in his journey with CHD. Get ready to be inspired by Ahmad's indomitable spirit and unwavering determination to embrace all that life has to offer.
Content note: The content touches on medical procedures and challenges faced. If you or someone you know may find this content distressing, we encourage you to approach this episode with care or consider listening with a supportive presence.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Ahmad El Haj Youssef
Producer: Becky Oakley
In this episode, Rachael interviews May Chan and Bambang Kurnia, from the Royal Children's Hospital in Melbourne. May is an experienced Clinical Nurse Consultant in Cardiac Surgery, with a tenure at RCH since 1985. Her primary role involves managing and coordinating teams for cardiac surgeries, ensuring the highest standard of care for patients and their families. Joining May is her colleague Bambang Kurnia, an Associate Unit Manager at RCH. Bambang works closely with May in the cardiac theatre team, contributing his expertise to enhance the quality of healthcare provided.
Content note: The content touches on the topic of pediatric cardiology and the challenges faced in this field. If you or someone you know may find this content distressing, we encourage you to approach this episode with care or consider listening with a supportive presence.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guests: May Chan and Bambang Kurnia
Producer: Becky Oakley
In this episode of From the Heart, Rachael Knowles speaks with Syeda Sultana a devoted sibling and steadfast advocate for her brother who sadly passed away in 2022. A passionate advocate for equitable healthcare, Syeda is now an aspiring medical student with a keen interest in congenital heart defects, hoping to one day to make a difference in the field of paediatric cardiology.
Content note: This episode of From the Heart contains discussions of loss and grief related to a congenital heart defect. The content also touches on the topic of pediatric cardiology and the challenges faced in this field. If you or someone you know may find this content distressing, we encourage you to approach this episode with care or consider listening with a supportive presence.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Syeda Sultana
Producer: Becky Oakley
Mel is a project coordinator at HeartKids, as part of the National Action Plan, implemented to reduce the impact of childhood heart disease in Australia and achieve the goal that people with childhood-onset heart disease live longer, healthier and more productive lives.
In this episode, Mel chats about the projects she runs at HeartKids, focusing on increasing support for families online, and over the phone.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Melissa Clarke
Producer: Melissa Clarke, Becky Oakley
Dr Prem is cardiothoracic surgeon based in Queensland, at Queensland Children’s Hospital. He performs lifesaving surgeries on children with CHD, and is involved in cardiac initiatives across the state and overseas.
In this episode, Prem talks about CHD surgery, the close-knit team of professionals he works alongside, and his everlasting bond with each of the children he operates on.
CONTENT WARNING
This episode contains information about surgery.
Please listen in a safe space and remember you can pause if you need to.
If any of the information about surgery brings up worry for you, please contact any of the below helplines for support
BeyondBlue
1300 22 4636
Available: 24/7
Griefline
1300 845 745
Available: 8am to 8pm Monday to Friday
Kids Helpline
1800 55 1800
Available: 24/7
Mensline
1300 78 99 78
Available: 24/7
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Dr Prem Venugopal
Producer: Melissa Clarke, Becky Oakley
Laura is a cardiac genetic counsellor and current PhD candidate with research projects focusing on inherited cardiomyopathy and arrhythmia. In this episode, Laura talks about what genetic counselling is, who can access it, and how genetic counselling is used to understand more about health conditions, and accessing the right supports around those conditions.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Laura Yeates
Producer: Melissa Clarke, Becky Oakley
Marjorie is a Kombumerri woman, who was born with Tetralogy of Fallot, and had surgery at the age of 13, in 1968.
In this episode, Marjorie talks about her surgery, the support available for those in 1968 with CHD, and raising awareness of other adults living with CHD.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
LINKS
CREDITS
Host: Tahnee Jash
Guest: Marjorie Doyle
Producer: Melissa Clarke
Kenya was diagnosed with a heart condition at the age of 14. In this episode, Kenya talks about travelling for open heart surgery, her connection with her family, and raising awareness of Rheumatic Heart Disease (RHD) through her film making work and Champions 4 Change.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
LINKS
Learn more about RHD:
http://www.rhdaustralia.org.au
Watch Kenya's films about RHD:
Sharing a Heartbeat: A short film about RHD in pregnancy
https://www.youtube.com/watch?v=-DDkFUZTrqs
Sharing A Heartbeat 2
https://www.youtube.com/watch?v=073iA5hwDIE
CREDITS
Host: Tahnee Jash
Guest: Kenya McAdam
Producer: Isobel Pritchard-Davies, Melissa Clarke
Arthur is a dad to a daughter with CHD, and a passionate fundraiser for HeartKids through his workplace. In this episode, Arthur talks about his family’s grassroots fundraising efforts, Greek sweets, and the joy of supporting the heart kids community with scholarships via his workplace, Drake’s Supermarkets.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Arthur Iliopolous
Producer: Isobel Pritchard-Davies, Melissa Clarke
Catherine is a mother to a 13-year-old with CHD and has worked in the education system for 18 years. In this episode, Catherine talks about children with CHD entering the education system, and the preparations and supports that are beneficial in this space
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Catherine Day
Producer: Isobel Pritchard-Davies, Melissa Clarke
Matt has been touched by CHD as both a husband and a father. Matt’s first wife Tina passed away in 2013 due to complications from hypertrophic cardiomyopathy. Two of Matt’s sons also live with this condition.
In this episode Matt talks about the complexity of navigating diagnoses, bereavement, and the strength of his sons.
Content Warning
This episode contains information about bereavement. Please listen in a safe space and remember you can pause if you need to.
If any of the information about bereavement brings up worry for you, please contact any of the below helplines for support
BeyondBlue
1300 22 4636
Available: 24/7
Griefline
1300 845 745
Available: 8am to 8pm Monday to Friday
Kids Helpline
1800 55 1800
Available: 24/7
Mensline
1300 78 99 78
Available: 24/7
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Matt Nelson
Producer: Isobel Pritchard-Davies, Melissa Clarke
Eve is a 23-year-old from Melbourne who lives with a congenital heart condition. Eve is a keen skier, ice hockey player and cold water swimmer! In this episode, Eve talks about how having a heart condition has impacted her body image and relationship with her body, her journey to becoming more independent with her health care, and the importance of support networks.
LINKS
Join HeartKids' Instagram for teens and young people @youthzone_heartkids: www.instagram.com/youthzone_heartkids
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Eve Alexiadis
Producer: Isobel Pritchard-Davies
LINKS
Join the HeartKids Dads group: HeartKids Dads Facebook Support Group
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sami Glastonbury
Guest: Ben Taylor
Producer: Isobel Pritchard-Davies
At Sami's 21-week scan, she was told her unborn baby had a heart condition. In that moment, life changed forever.
In this episode, Sami bravely opens up about losing parts of her identity after becoming a heart mum. She talks about what it's like entering the extreme caregiver role and the sacrifices she made as a result, like missing some of her other children's milestones, and hitting pause on her career for a time.
Frank is now eight years old. Frank also has some vision impairment and an intellectual disability. Sami talks about what it has been like navigating schooling with a child with special needs, and how to find the right support for your family.
Sami will also be joining the podcast as a new co-host in 2023! As a heart mum, Sami brings a new perspective to our conversations this year.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Sami Glastonbury
Producer: Isobel Pritchard-Davies
Counting down our most popular episodes of 2022... #1!
When your child is unwell, often it's the only thing you can focus on or think about. But what happens if you start to notice you are struggling?
Kimberley opens up on the recovery she has had to navigate since bringing her daughter home from surgery. This story is about parent's mental health, self-care, and learning how to reach out for help when you need it. Kimberley also talks us through what it's like receiving a new diagnosis and taking your child in for surgery.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
LINKS
Watch Kimberley's video: https://youtu.be/oRnfl7PH2Jk
Navigating a New Diagnosis (Fact Sheet): https://hkheartkids.blob.core.windows.net/assets/pages/07HKFNewDiagnosis31.5.21.pdf
Listen to Rachael's story: https://www.buzzsprout.com/1900105/10031016-the-grief-at-the-heart-of-it-rachael-knowles-story
CREDITS
Host: Rachael Knowles
Guest: Kimberley Cepon
Producer: Isobel Pritchard-Davies
Counting down our most popular episodes of 2022... #2!
What is neurodevelopment?
What is the connection between CHD and neurodevelopment in children?
What are the early indicators that a child may be experiencing neurodevelopmental difficulties?
How are neurodevelopmental issues diagnosed?
What sort of treatments and therapies are available?
What research is happening in this area?
What is the CHD Life+ research program and how could it transform neurodevelopmental care for young cardiac patients in Australia?
Cardiologists Rob Justo and Will Parsonage answer these questions and more in this information-packed episode.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
LINKS
Find our more about CHD Life+: https://www.aushsi.org.au/aushsi-research/congenital-heart-disease-long-term-improvements-in-functional-health/
CREDITS
Host: Sam Stolberg
Guest: Associate Professor Robert Justo and Professor William Parsonage
Producer: Isobel Pritchard-Davies
Counting down the most popular episodes of 2022... #3!
Should I exercise if I have a heart condition?
The answer is, almost everyone with a congenital or childhood heart condition can benefit from exercise. When done safely, regular exercise is one of the best things you can do for your heart and overall health. Cardiologist Rachael Cordina joins us to bust some exercise and CHD myths and help all listeners learn more about exercise.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
LINKS
Learn more about CHD and Exercise (Fact Sheet): https://hkheartkids.blob.core.windows.net/assets/pages/09%20HKFExercise.pdf
Read a blog entry about CHD and Exercise: https://www.heartkids.org.au/news/6/congenital-heart-disease-and-exercise
CREDITS
Host: Sam Stolberg
Guest: A/Prof Rachael Cordina
Producer: Isobel Pritchard-Davies
Dr Ben Reeves is a paediatric cardiologist in North Queensland. He's one of only three paediatric cardiologists you'll find north of Brisbane. Between 30-40% of Dr Reeves workload is related to rheumatic heart disease (RHD), a type of childhood heart disease.
RHD was common in Australia's big cities in the 1950s and 1960s. Since then it's largely been eradicated in white populations in our major cities. However, rates of RHD persist in Aboriginal and Torres Strait Islander, immigrant and South Sea Islander communities in Australia. Unlike congenital heart disease, we know exactly what causes RHD, so why are children within these communities still contracting it?
Ben's dream is to one day see no more patients in his waiting room with RHD. Ben talks about RHD in Australia, remote health care, his path to paediatric cardiology, and more in this eye-opening episode.
LINKS
Learn more about RHD in Australia: https://www.rhdaustralia.org.au/
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Samuel Stolberg
Guest: Dr Ben Reeves
Producer: Isobel Pritchard-Davies
Liza is a psychologist. She also lives with a congenital heart condition. In this episode, we talk all about the psychological needs and challenges that come along with living with a childhood heart condition.
Dr Morton also shares psychological coping strategies for people living with CHD and talks about her upcoming book 'Healing Hearts and Minds: A Holistic Approach to Coping Well With Congenital Heart Disease'.
LINKS
Pre-order Dr Liza Morton's book: https://www.booktopia.com.au/healing-hearts-and-minds-tracy-livecchi/book/9780197657287.html
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Dr Liza Morton
Producer: Isobel Pritchard-Davies
Evelyn has helped thousands of young people transition from the paediatric to adult health care system. Out of the Royal Children's Hospital in Melbourne, Evelyn runs one of the most successful transition programs in the country. She answers all our health care transition questions in this episode. What makes a positive transition experience? Why is a positive health care transition important? What can teens do to promote a positive transition? What can parents do? What are some of the barriers to a positive transition and how can we remove them? This episode is for teens with heart conditions, as well as their parents!
LINKS
Find out more about the transition to adult care: https://www.heartkids.org.au/page/218/learning-about-transition
Check out UpBeat by HeartKids, an app that supports teens with heart conditions: https://www.heartkids.org.au/page/217/upbeat
Check out the transition program at the Royal Children's Hospital where Evelyn works: https://www.rch.org.au/transition/
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Evelyn Culnane
Producer: Isobel Pritchard-Davies
Growing up in regional NSW, Claire was the only heart kid in town. Attending HeartKids Teen Camp and meeting other young people was a gamechanger for her. In this episode, Claire talks about her life growing up with a heart condition and shares some messages for teens and young adults living with CHD.
LINKS
Learn more about HeartKids Teen Camps: https://www.heartkids.org.au/page/169/teen-camps
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sam Stolberg
Guest: Claire Hollinworth
Producer: Isobel Pritchard-Davies
The Standards of Care for the Childhood-onset Heart Disease (CoHD) community are over 10 years in the making.
What are the CoHD Standards? They outline the healthcare requirements for CoHD services in Australia. Having these Standards in place will help all patients, families and carers affected by CoHD to live their best and healthiest lives.
Professor Gary Sholler is the Co-Chair of the CoHD Standards of Care project. In this episode, he explains why and how the CoHD standards project came about, how they have the potential to transform CoHD care in Australia, and how you can get involved.
LINKS
Give your feedback on the Australian National Standards of Care for Childhood-onset Heart Disease: https://cohdnationalstandards.com.au/
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Professor Gary Sholler
Producer: Isobel Pritchard-Davies
Deb was born in 1968 with a complex heart condition. It wasn't until the late 70s that Deb was able to have surgery for her condition. Deb credits her personal strength and resilience back to her experiences growing up with a heart 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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Debbie Mackellin
Producer: Isobel Pritchard-Davies
We catch up with co-hosts Rachael and Sam to hear how they are going on their journeys. Rachael and Sam also chat about the podcast - what they've learnt since starting the series, embarrassing moments they've shared during recordings, their favourite episodes, and more.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Co-hosts: Rachael Knowles and Sam Stolberg
Producer: Isobel Pritchard-Davies
George is 21 years old from Tasmania. Born with a complex heart condition, George has had six open-heart surgeries.
In this episode, George talks about what it was like travelling to Melbourne for surgery as a young kid, how he navigated his teenage years despite some physical limitations, how he looks after his mental health and how attending HeartKids Teen Camps changed his life. George is passionate about mentoring and shares lots of advice for younger heart kids navigating their own journeys.
George is also currently planning his own football-related fundraising event in Tassie for the third year in a row, called Kick for HeartKids 3.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
LINKS
Find out more about the Kick for HeartKids event: https://www.heartkids.org.au/my-fundraising/237/kick-for-heartkids-3
More information about HeartKids Teen Camps and Events: https://www.heartkids.org.au/page/169/teen-camps
CREDITS
Host: Rachael Knowles
Guest: George Clarke
Producer: Isobel Pritchard-Davies
When Hannah noticed one of her twins wasn't taking as much milk from the bottle during feeding, she never thought it could be a problem with her baby daughter's heart. The diagnosis that followed was serious. Baby Maddie needed multiple surgeries in her first years of life.
In this episode, Hannah talks about her journey with bottle-feeding, the impact the CHD journey can have on siblings, what it's like starting school with a heart kid, managing developmental delays, the importance of creating a strong relationship with your child's school, and how to tap into the HeartKids community for support.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
LINKS
Find our more about HeartKids Two Feet And A HeartBeat walk: https://www.twofeetheartbeat.org.au/
CREDITS
Host: Rachael Knowles
Guest: Hannah Pearl
Producer: Isobel Pritchard-Davies
What is neurodevelopment?
What is the connection between CHD and neurodevelopment in children?
What are the early indicators that a child may be experiencing neurodevelopmental difficulties?
How are neurodevelopmental issues diagnosed?
What sort of treatments and therapies are available?
What research is happening in this area?
What is the CHD Life+ research program and how could it transform neurodevelopmental care for young cardiac patients in Australia?
Cardiologists Rob Justo and Will Parsonage answer these questions and more in this information-packed episode.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
LINKS
Find our more about CHD Life+: https://www.aushsi.org.au/aushsi-research/congenital-heart-disease-long-term-improvements-in-functional-health/
CREDITS
Host: Sam Stolberg
Guest: Associate Professor Robert Justo and Professor William Parsonage
Producer: Isobel Pritchard-Davies
ECGs, chest x-rays, blood tests, ultrasounds, exercise tests, CT scans, MRI scans and catheters. If you have a childhood heart condition, you have likely encountered some or all of these tests before. Professor David Celermajer is one of the top adult cardiologists in Australia and the world. In this episode, he explains what each of these tests are, what's involved in getting them, why cardiologists use them, and the importance of regular check-ups.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sam Stolberg
Guest: Professor David Celermajer
Producer: Isobel Pritchard-Davies
Caitlin was born with pulmonary atresia with a VSD, requiring three surgeries before the age of one.
In Year 12, Caitlin was busy thinking about what formal dress she wanted to wear and her university admission score, when she was told she would need another procedure. Caitlin is now 20 and is about to sit the admission exam to study medicine. Her experience with her heart is part of the drive behind why she wants to become a doctor and help others.
Caitlin is an amazingly resilient, driven and empowered young woman. In this episode, she talks all about what it was like growing up with her condition, how her heart has impacted her sense of self, and her dreams for the future!
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Rachael Knowles
Guest: Caitlin Cranitch
Producer: Isobel Pritchard-Davies
Levi is a young father and amateur triathlete from Brisbane. In his early twenties, Levi dropped out of care.
Levi's hospital had been trying to get in touch with him as he needed a third surgery on his heart. Like when he was young, Levi's parents were there to help him through his third open-heart surgery.
Levi is now 36 and a father to two beautiful children. Through parenthood, he has developed a new understanding of the support his parents gave him growing up as a heart kid. Levi's story highlights the importance of check-ups and follow-up care, and celebrates the amazing support our networks provide in times of need.
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
CREDITS
Host: Sam Stolberg
Guest: Levi Schulkins
Producer: Isobel Pritchard-Davies
After 5 open heart surgeries, Elle is a pro. She shares tips for how to prepare, what to expect during it, and the best ways to recover.
How do you make sure you've got the right people on your medical team?
How do you prepare psychologically?
How can you manage the impact on work or study?
What's it like waking up after surgery?
What does pubic hair have to do with any of this?
Elle and Sam answer these questions and more!
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 congenital and childhood heart disease. For support, information or guidance on your CHD journey, call the HeartKids Helpline on 1800 432 785 or visit the website at https://www.heartkids.org.au
LINKS
Read Elle's blog: https://www.heartkids.org.au/news/2/open-heart-surgery-tips-tricks-from-a-pro
Watch host Sam's video: https://youtu.be/qXH9mF9CynM
CREDITS
Host: Sam Stolberg
Guest: Elle Pendrick
Producer: Isobel Pritchard-Davies
Kooma woman Netty Gaulton is an Aboriginal Case Manager within the cardiac unit at the Royal Children's Hospital in Melbourne. In this role, Netty provides emotional, social and cultural support to Aboriginal and Torres Strait Islander children and families visiting the hospital. Why do you think Aboriginal and Torres Strait Islander people don't always feel comfortable accessing health services? How can we make hospital environments more welcoming for Aboriginal and Torres Strait Islander people? Netty answers these questions and many more.
Host: Tahnee Jash
Ebony had no idea her two-year-old daughter Milly even had a heart condition when she became unwell and was rushed to hospital one night. The doctors thought it might be Milly's kidneys, but soon discovered it was her heart. Ebony was told Milly was in heart failure and urgently needed a heart transplant. Milly is now six years post-transplant and is a happy and healthy nine-year-old thanks to what she calls her 'angel heart'.
Host: Rachael Knowles
Mirana and her research team have identified 35 new genes associated with congenital heart disease. Their research is changing what we know about the genetic causes of congenital heart disease... all with the help of vinegar flies! Listen in to this bonus episode to find out how these Australian researchers are expanding what we know about genes and CHD.
Host: Rachael Knowles
Mandela is a Yawuru woman from Broome in Western Australia. Mandela was 29 weeks pregnant with her first child when she received the news that her baby had a heart condition. What followed was four surgeries in 16 months for her baby Myles and many months away from home and family. Mandela shares advice for other families who may be receiving a new diagnosis in their child or dealing with surgeries.
Host: Tahnee Jash
Lynette is a Torres Strait woman from Moa Island. Lynette had never heard of rheumatic heart disease (RHD) before her son Jalil was diagnosed four years ago. To keep his heart healthy and strong, Lynette and Jalil now go to the local hospital every four weeks for his antibiotic injection. Jalil struggled with the pain at first but now with the help of the buzzy bee, Entonox gas, and support from his family and nurses at the hospital, Jalil is feeling better about his injections. Lynette shares advice for other families who might be receiving a new diagnosis of RHD.
Host: Tahnee Jash
Growing up with a scar on his chest, Sam Chung sometimes felt different from his friends. Attending his first HeartKids Teen Camp and meeting other teens with the same zipper was a huge turning point for him. Sam is now 22 and is studying law, a decision which he says his heart played a vital role in. Sam talks about about his experience transitioning to the adult health care system and how he's learning to balance his life alongside his condition.
Host: Sam Stolberg
What does having a congenital heart condition mean for pregnancy and fertility? How can my health care team help me prepare for pregnancy and starting a family? What can happen to the heart after having a baby? What is the best contraception to use when not trying for a baby? Cardiologist Dominica Zentner answers these questions and more on this information-packed episode of the podcast.
Host: Rachael Knowles
Ten years ago, Tash D'Souza had never heard of congenital heart disease or HeartKids. That all changed in 2012. A routine visit to the GP with her three-year-old son turned into an urgent referral to a cardiologist. A few weeks later, Tash was finding out her son had a congenital heart condition. This shock diagnosis meant major heart surgery. Tash felt isolated and alone, until she met a Family Support Coordinator from HeartKids. Many of the support team members at HeartKids are other heart parents. They are not medical professionals, they are peers. They provide invaluable emotional and experiential support to families on the CHD journey. After her son's surgery, Tash made it her mission to spread awareness about CHD. She now works at HeartKids in a support role, using her experience as a heart mum to support others on the CHD journey.
Host: Sam Stolberg
Dom's message for anyone experiencing grief is simple: You are not alone. The Frawley family experienced devastating loss in 2013 when their youngest son, Malachy, passed away due to his complex congenital heart condition. Dom recently published a book reflecting on his family's journey through love, loss, grief and hope. In the book and in this episode, Dom opens up about the impact of the CHD journey on siblings, parenting through hardship and loss, and how we can all better support the people around us. With the backdrop being a touchingly beautiful father-son love story, it's also an ode to the special love and bond experienced between parent and child. This episode is for all parents, as well as anyone experiencing grief.
Malachy: A father's story of love, laughter and loss is published by Wild Dingo Press: https://www.wilddingopress.com.au/shop/p/9781925893656
Host: Sam Stolberg
Kennedy Cherrington had open-heart surgery when she was eight years old. Today she plays in the NRLW for the Parramatta Eels and is one of the brightest young talents in the league. In this episode, Kennedy opens up about her mindset and how she has overcome challenges on her journey. Kennedy is a HeartKids ambassador and an incredible role model within our community. This episode is for parents of heart kids, young people with a heart condition, and footy fans!
Host: Sam Stolberg
Can you be strong about your heart condition and grieve for it at the same time? Growing up, Rachael never let her heart condition get in her way. She found herself pushing through rather than processing some of the trauma she experienced. Rachael is now 24 and with the support of her family and health care team, she is navigating a journey to healing. Rachael also talks about what it was like growing up with CHD in a small rural town, how to advocate for yourself on your medical journey, why being proactive on family planning is important for young women with CHD, and so much more.
Host: Sam Stolberg
Should I exercise if I have a heart condition? The answer is, almost everyone with a heart condition can benefit from exercise. When done safely, regular exercise is one of the best things you can do for your heart and overall health. Cardiologist Rachael Cordina joins us to bust some exercise and CHD myths and help all listeners learn more about exercise.
Host: Sam Stolberg
What is pregnancy like when you have a congenital heart condition? Tegan Le Breton had a Fontan procedure as a child. She's now 34 years old and a mother of three. Her experience of pregnancy has been different each time, and not always smooth, but each time it's been made possible through the support and careful guidance of her cardiology and health care team.
Host: Rachael Knowles
When your child is unwell, often it's the only thing you can focus on or think about. But what happens if you start to notice you are struggling? Kimberley Cepon opens up on the recovery she has had to navigate since bringing her daughter home from surgery. This story is about parent's mental health, self-care, and learning how to reach out for help when you need it. Kimberley also talks us through what it's like receiving a new diagnosis and taking your child in for surgery.
Host: Rachael Knowles
What is having open-heart surgery really like? Sam Stolberg was born with a heart condition. Growing up, his condition didn't impact him very much. Sam played high-level rugby league throughout high school. Then in 2017, at the age of 26, Sam received the news that he would have to have open-heart surgery within 90 days. Listen in to hear how Sam dealt with this life-altering news, his surgery and recovery, his thoughts on mental health and resilience, and what he's learnt over the course of his unique journey. Sam Stolberg is also one of the hosts of this podcast.
Host: Rachael Knowles