What It Means to Advocate for Congenital Heart Disease

By Adrian Adair, Founder of Heartbeat Forward

There is a particular kind of exhaustion that families affected by congenital heart disease carry.

It is not only the sleepless nights in hospital waiting rooms. It is not only the weight of a diagnosis that sometimes arrives before a child has even drawn their first breath. It is something quieter and more constant than that.

It is the exhaustion of explaining.

Explaining, over and over again, to well meaning people who nod and say they understand, but do not quite. The exhaustion of gently reminding others that congenital heart disease is not something a child simply grows out of. That it is not a minor condition. That it is, in fact, the most common birth defect in the world, and yet somehow most people have never truly heard about it.

That space between what families live every day and what the world understands about congenital heart disease is exactly where advocacy lives.

When I founded Heartbeat Forward, I did not have a detailed roadmap. I did not begin with a perfectly structured plan or a polished pitch deck.

What I had was something quieter and far more stubborn than that.

I had a belief, deep and unshakeable, that these children and the families who love them deserved more than silence. They deserved to be seen. Not as statistics buried in medical journals. Not as fleeting inspiration in a social media post. But as real people navigating something most of us cannot fully imagine, often with a strength and grace that takes your breath away.

Over time, I have come to understand that advocacy is not one single act.

It is not only marching in rallies, fundraising for research, or sitting in the offices of legislators and asking them to pay attention. All of those things matter deeply.

Sometimes advocacy is much quieter.

Sometimes it looks like sitting beside a parent who has not slept in three days and simply being present with them. Not fixing anything. Not offering easy answers. Just letting them know they are not invisible.

Sometimes it looks like a care package arriving on a cardiac unit, carefully assembled and sent with intention. A small gesture that carries a simple message. The world outside those hospital walls has not forgotten you.

Sometimes advocacy looks like writing late at night because you cannot stop thinking about a family you met weeks ago, and you find yourself hoping, genuinely hoping, that their child is doing well.

That is what this work feels like from the inside.

And I want to be honest about something that is not often said aloud. Advocating for congenital heart disease can be lonely work.

The condition does not yet have the cultural visibility it deserves. There are no massive awareness campaigns that dominate the national conversation each year. There are no celebrity driven fundraising moments that reliably move the needle.

Instead, what exists are families doing extraordinary things in relative quiet.

Parents who become researchers, medical coordinators, and advocates for their own children out of sheer necessity. Siblings who grow up faster than they should, learning how to protect and love in ways no child should have to learn so early. And children, small and brave and full of life, who never asked to be called warriors, yet carry that title with a dignity that humbles everyone around them.

My role, as I understand it, is simple.

My role is to make their quiet a little louder.

Heartbeat Forward exists because I believe something simple and undeniable. Proximity changes people.

When you sit beside a child recovering from open heart surgery, something shifts inside you. When you speak with parents who have learned to navigate fear, hope, and uncertainty all at once, you begin to see the world differently.

You cannot unknow what you have seen. You cannot return to who you were before that moment.

And it is that shift, quiet but permanent, that turns someone who once watched from a distance into someone who cannot imagine doing anything other than showing up.

You do not need a personal connection to congenital heart disease to care about it.

You simply need to be the kind of person who, once they understand, cannot look away.

If you are reading this as a CHD parent, sibling, or family member, I want to speak to you directly for a moment.

You are not carrying this alone.

There are people who see you. There are organizations being built right now because your child's life matters. Your story matters. The courage it takes to keep showing up day after day, for every appointment, every procedure, every ordinary and extraordinary moment, is one of the most profound expressions of love I have ever witnessed.

Do not let anyone diminish that.

What you are doing is not small.

It is everything.

That is what advocating for congenital heart disease means to me.

It means showing up for the children, for the families, and for the simple truth that every heart, no matter how complex and no matter how fragile, deserves a fighting chance.

Heartbeat Forward is how I choose to show up.

And I am grateful, every single day, for the privilege of doing it.

Adrian Adair is the founder of Heartbeat Forward, a federally recognized 501(c)(3) nonprofit dedicated to raising awareness of congenital heart disease and supporting children in cardiac care.

Learn more at heartbeatforward.org.