Adrian Adair · CHD Advocacy
Advancing the
conversation
forward.
Congenital heart defects are the most common birth defects worldwide. Yet public awareness, emotional support, and long-term advocacy remain significantly underdeveloped. That is the problem this work exists to solve.
1 in 100
children born with congenital heart disease — the most common birth defect on earth
Adrian Adair
Advocate · Author · Founder
The conviction
When a condition affects so many families yet remains under-recognized, intentional advocacy is not optional. It is necessary.
Why Advocacy Is Necessary
The medical reality
The medical reality
is only part of it.
Congenital heart defects often require complex surgeries, ongoing medical monitoring, extended hospital stays, and lifelong follow-up care. That is the clinical side of the story.
Beyond the medical realities, families frequently face emotional strain, financial pressure, and limited access to coordinated support. Advocacy is about all of it.
Advocacy is not only about awareness. It is about visibility, systems of support, and sustained public attention. It is about ensuring that the people who carry this quietly are no longer invisible.
What families face
Complex, Repeated Surgeries
Many children with CHD require open-heart surgery before their first birthday, and multiple procedures across a lifetime.
Lifelong Medical Monitoring
CHD does not end in childhood. Adults with CHD require specialized cardiac care indefinitely — a reality most people never hear about.
Emotional and Financial Strain
Families report profound isolation, anxiety, and financial devastation. The systems meant to help them are rarely built around their actual needs.
Inadequate Public Awareness
More children die from CHD each year than from all childhood cancers combined. Yet most people have never heard the term spoken out loud.
Areas of Focus
Where the
Where the
work lives.
Adrian's advocacy is not scattered. It is deliberate. Every effort is focused on areas where sustained attention produces measurable change for children and families living with congenital heart disease.
01
Public Education
Building clear, compassionate, accessible public understanding of what congenital heart disease is, who it affects, and why it matters to everyone.
02
Elevating CHD Families
Ensuring the experiences of children and caregivers are heard, respected, and reflected in how institutions and communities respond.
03
Institutional Collaboration
Supporting alignment between nonprofits, hospitals, and healthcare professionals to deliver more coherent, comprehensive support.
04
Literary Advocacy
Using books, essays, and the written word to carry CHD stories into the public consciousness in a way that outlasts any single campaign.
05
Long-Term Policy Awareness
Encouraging sustained policy attention and research investment that matches the true scale and urgency of congenital heart disease.
06
The Podcast
Small Hearts, Loud Voices brings CHD stories into public conversation one episode at a time. Every small heart deserves a loud voice.
A long-term
commitment.
Awareness must extend beyond awareness month.
Support must extend beyond hospital discharge.
Visibility must extend beyond statistics.
Children born with congenital heart defects deserve consistent advocacy, systemic attention, and a future strengthened by coordinated support.
The Long View
Congenital heart defects are not a short-term issue. They are lifelong conditions that require ongoing care, sustained attention, and advocates who will not walk away when the news cycle moves on.
This work is being built deliberately. Through Heartbeat Forward, through the written word, through every public conversation that refuses to let CHD remain invisible.
The goal is not a single campaign. The goal is a world in which every child born with a congenital heart defect is seen, supported, and given every possible chance to grow up.
Together, we can
expand visibility
and change outcomes.
Adrian welcomes collaboration with healthcare professionals, nonprofit leaders, journalists, and institutions seeking to strengthen awareness and improve support systems for families affected by CHD.