HeartKids CoHD Real Talk

Have you ever wanted to explore what life is like for others living with CoHD? Our CHD Real Talk series provides a snapshot of the diverse voices and experiences within the CoHD community.

Candid Conversations on Thriving with CoHD

Join us for our video series which shares heartfelt insight on living with Childhood onset Heart Disease (CoHD).

Living with CoHD can often feel isolating, but within the CoHD community, many individuals encounter similar challenges and experiences. In this video series, you’ll hear from adults, young people, parents, and siblings who generously share their unique perspectives.

CoHD Real Talk delves into the complexities, thoughts, and emotions of people’s individual CoHD experiences, capturing the highs, lows, and everything in between.

We hope you enjoy this insightful series, made possible by those with lived experience in our diverse HeartKids community.

Episode 1


In this first episode of our CHD Real Talk series, hear from the HeartKids community on how their heart condition has shaped their understanding of themselves, taught valuable life lessons, and influenced their outlook on life.

Episode 2

New Diagnosis A Patients Experience

In this second episode of Real Talk, hear first hand accounts from parents of initial feelings, the journey of coming to terms with a new diagnosis for their child, and the importance of support in navigating a CoHD diagnosis.
Episode 3

Body Image and Scars

In this third episode of CHD Real Talk, HeartKids open up about their body image and feelings about scars. Heart adults, teens and kids share their experiences of embracing and accepting their bodies at every age.
Episode 4

Family Coping and Parenting

In this episode of CHD Real Talk, HeartKids parents share experiences and offer valuable advice on caring for a child with CoHD, including fostering resilience, and creating a supportive environment after diagnosis.
Episode 5

Disclosing Your Heart Condition

In episode of CHD Real Talk, community members openly share their experiences discussing their heart conditions with others, offering invaluable insights into the emotions and reactions that arise during these conversations and just how significant these moments can be.
Episode 6

Preparing for Your Child’s Surgery

Join us for another candid CHD Real Talk where parents share their experiences of preparing for their HeartKid’s surgeries. Hear useful tips on how to prepare mentally, emotionally, and practically for the challenges ahead.
Episode 7

Being a Heart Sibling

In this CHD Real Talk video, heart siblings share their experiences growing up with a brother or sister with a heart condition. They talk candidly about the challenges, emotions, and the special bond they share.
Episode 8

Mental Health

In this episode of CHD Real Talk, members of our HeartKids community talk about their mental health and the unique perspective they’ve gained from living with a heart condition. Hear thier insights on gratitude, empathy, and personal growth.
Episode 9


In this special CHD Real Talk episode, we dive into a topic that touches the hearts of many within the CoHD community: Bereavement. Find understanding and solidarity on navigating or supporting others through loss. If you’re facing the challenges of grief, know that you’re not alone. HeartKids and the entire heart community are here for you.

Episode 10

Becoming Independent

Becoming independent isn’t always easy, but it’s crucial for young people to think about the future and stay connected with their healthcare team. From dealing with peer pressure to navigating medical appointments, this episode provides valuable advice on taking charge of your heart condition.

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