In Their Own Words: A CHD Child's Story

Most of the time when the world talks about congenital heart disease it talks about it in the language of adults.

In the language of diagnoses and surgical procedures and awareness campaigns and advocacy goals. It talks around the children. Above them. On their behalf. And somewhere in all of that the most important voice in the room gets lost.

The child's.

Episode 005 of Small Hearts, Loud Voices gives it back.

This episode belongs to August. He is nine years old. He has brown eyes and a gap between his front teeth and two hundred and forty seven Hot Wheels cars organized by color in a system that makes complete sense to him and to no one else. He was born with Atrioventricular Septal Defect, a hole between all four chambers of his heart. He has had two open heart surgeries. He has a scar that runs from the base of his throat to the center of his chest.

He calls it his zipper. He named it himself when he was four.

August is not a statistic. He is not a case study. He is not a symbol or a mascot or a poster child for anything. He is a nine year old boy who eats cereal for breakfast and argues with his sister about the remote control and thinks about his heart every single morning when he wakes up and nothing hurts.

In this episode we talk about what the research tells us about CHD children and emotional intelligence. We sit with August and hear his story in his own words. We speak directly to every CHD child who has ever carried something quietly because they were afraid their honesty would make the people they love afraid. And we give you something real you can do today to make sure the children in your life feel heard.

Because CHD children understand their own condition far earlier and far more deeply than most adults give them credit for. They have been through more by age five than most people face in a lifetime. They are empathetic and resilient and wise in ways that take your breath away.

And they have been waiting for someone to stop talking long enough to listen.

This episode is that moment.

In this episode:

The Fact: What research tells us about CHD children, emotional intelligence, resilience, and the quiet weight they carry.

The Story: August. Nine years old. A zipper scar. Two hundred and forty seven Hot Wheels cars. And more wisdom about being alive than most adults will ever find.

The Encouragement: Spoken directly to the children. Not the parents. Not the caregivers. The children themselves.

The Call to Action: Share your story with the Heartbeat Forward community in your own words.

Keywords: congenital heart disease children, CHD child story, CHD kids, living with congenital heart disease, Atrioventricular Septal Defect, AVSD, CHD awareness, CHD emotional resilience, pediatric heart disease, congenital heart defect child, CHD podcast, Small Hearts Loud Voices, Heartbeat Forward, Adrian Adair, congenital heart disease podcast, CHD family, heart surgery child, pediatric cardiology, CHD survivor story

Resources

Visit heartbeatforward.org to share your story, learn about our mission, and support the children and families who need it most.

Read The Quiet Majority by Adrian Adair, available now on Amazon.

Small Hearts, Loud Voices is a production of Heartbeat Forward, a federally recognized 501(c)(3) nonprofit organization founded by Adrian Adair.

Because every small heart... deserves a loud voice.