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
Ben Taylor runs HeartKids Dads, a national support group for fathers of children with heart conditions. In this episode he talks about his own family's journey with CHD, as well as all the different ways the HeartKids Dads group provides support to the community. The group has been running for 9.5 years and has grown from 6 members to over 250 today.
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?
What's the best part about your role?
Netty answers 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
Learn more about Wadja Aboriginal Family Place: https://www.rch.org.au/afsu/
CREDITS
Host: Tahnee Jash
Guest: Annette Gaulton
Producer: Isobel Pritchard-Davies
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'.
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
HeartKids Support Group: https://www.facebook.com/groups/heartkidssupport
CREDITS
Host: Rachael Knowles
Guest: Ebony Mallinson
Producer: Isobel Pritchard-Davies
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 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 the causes of CHD (Fact Sheet): https://hkheartkids.blob.core.windows.net/assets/pages/02HKFCauses31.5.21.pdf
CREDITS
Host: Rachael Knowles
Guest: A/Prof Mirana Ramialison
Producer: Isobel Pritchard-Davies
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 child, or dealing with surgeries.
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 Mandela and Myles' story: https://hkheartkids.blob.core.windows.net/assets/contentpage_htmlcontent/HK%20Factsheet%20Indigenous%20Myles%20and%20Mani%20Story%20Final.pdf
CREDITS
Host: Tahnee Jash
Guest: Mandela Yu
Producer: Isobel Pritchard-Davies
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 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. This episode is part of our series for Aboriginal and Torres Strait Islander people.
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: https://www.rhdaustralia.org.au/
Watch Lynette and Jalil's video about injections: https://youtu.be/ZPhoI9qnu-s
CREDITS
Host: Tahnee Jash
Guest: Lynette Bullio
Producer: Isobel Pritchard-Davies