From The Heart: The HeartKids Podcast

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...

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 HEA...

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 Sta...

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 affecte...

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...

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 passi...

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 sibling...

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 neur...

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 card...

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 beh...

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 ha...

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...

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...

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 t...

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. HEARTKIDS From The Heart is brought to you...

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 must 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...

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 of congenital heart disease in their c...

Growing up with a scar on his chest, Sam 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 le...

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. HEA...

Ten years ago, Tash 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 congenital heart disease. This shock diagnosis meant major heart surgery. Tash felt isolated and alone, until she met a Family Support Coord...

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...

Kennedy 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...

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 gro...

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 Th...

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 th...