I am writing this letter because there are children in this country who cannot write it themselves.
They are too young. Too small. Too occupied with the business of surviving the first years of life with a heart that came into this world asking more of them than any heart should ask of anyone so new.
I am writing it because someone has to. Because the most common birth defect in the world has been quiet for too long in the halls where power lives. Because forty thousand families this year will receive a diagnosis that will split their lives in two, and they deserve a country that responds to that number with the full weight of its attention and its resources.
I am writing it because I believe in the office you hold. And I believe that when you understand what I am about to tell you, you will find it impossible to look away.
My name is Adrian Adair. I am the founder of Heartbeat Forward, a federally recognized nonprofit dedicated to congenital heart disease awareness, to the children in cardiac units across this country, and to a future in which no child dies from a condition that adequate research and resources could address. I am an author. I am an advocate. And I am a citizen of a country I believe is capable of being better than it has been on this issue.
I am writing to you about the children. I want to begin there, with the children, before I get to the policy, because policy without the human face behind it is just arithmetic. And this is not an arithmetic problem. It is a moral one.
There is a child being born in a hospital somewhere in America right now, as you read this sentence, whose heart is not forming the way it is supposed to form. The defect is congenital, meaning it was present before the child drew their first breath, before their parents had chosen a name, before anyone had imagined the life that was supposed to follow. One in every one hundred babies born in the United States arrives this way. That is more than forty thousand children this year alone. More than any other structural birth defect. More than all forms of childhood cancer combined.
Most of these families have no warning. The diagnosis arrives in a prenatal scan, or in a delivery room, or in the first terrifying hours of a life that had barely started. And when it does, the world reorganizes itself around a single question that has no easy answer: what happens now?
What happens now depends, to a degree that should trouble every American who knows about it, on how much money the federal government has decided this condition is worth understanding. And for decades, the answer to that question has been: not enough.
Mr. President, I want to tell you something about a woman named Helen Taussig. In 1944, she walked into an operating room at Johns Hopkins Hospital and changed the world. She had spent years studying children she called her blue babies, infants with tetralogy of Fallot whose blood was so starved of oxygen that their lips and fingertips turned blue. She was told her ideas were impractical. She was losing her hearing, and she learned to listen to hearts through her fingertips.
She partnered with surgeon Alfred Blalock and a laboratory technician named Vivien Thomas, a Black man whose contributions would go unacknowledged for decades, and together they performed the first blue baby operation. Children who would have died lived. The field of pediatric cardiology was born. And in the eight decades since that day in Baltimore, surgical advances built on that foundation have transformed congenital heart disease from a near-universal death sentence into a condition that more than eighty-five percent of children now survive into adulthood.
That progress did not happen by accident. It happened because the federal government invested in research. Because the country decided that children born with broken hearts were worth the scientific attention and the public resources required to save them.
I am here to tell you that decision needs to be made again. More deliberately. More urgently. At a scale proportional to the problem.
Right now, a parent is sitting in a cardiac waiting room. They are not reading. They are not on their phone. They are counting minutes and trying to remember how to breathe.
Right now, a seventeen-year-old with a repaired heart is being told their pediatric cardiologist can no longer see them. That they are too old now. That they need to find an adult specialist in a country where there are not nearly enough to go around, where geography determines whether you can find one at all.
Right now, a young woman with a congenital heart defect is sitting across from an obstetrician wondering whether her heart can sustain a pregnancy, whether her child will inherit her condition, whether the system that saved her life has built anything to support her through this.
Right now, there is legislation on the books because Senator Dick Durbin of Illinois co-sponsored it after losing his adult daughter to complications of congenital heart disease. He turned grief into law. But law without full funding and presidential leadership is a door without a key. And that key is yours.
These are not hypothetical Americans. They are real people living inside a condition this country has decided, through the passive violence of insufficient attention, does not require the full weight of its response.
Mr. President, they are waiting for you to decide differently.
I want to be specific, because vague appeals to compassion are easy to ignore and you deserve a letter that does not waste your time.
The Congenital Heart Futures Reauthorization Act of 2024 was signed into law. It authorized ten million dollars annually through 2029 for research, surveillance, and awareness at the CDC and NIH. Ten million dollars. For the most common birth defect in the world. For a condition that costs the American healthcare system more than six billion dollars a year. Ten million dollars is a beginning. It is not a response proportional to the scale.
The federal government spends more money on agricultural subsidies in a single afternoon than it has ever committed in a year to understanding the most common birth defect in the world. That is not a sustainable moral position for a country that calls itself the greatest on earth.
Here is what I am asking for. Not abstractly. Specifically.
These are not people who had a bad year. They are people whose entire understanding of what their life was going to look like was reorganized, without warning, around a diagnosis that most of their friends and family had never heard of. They have learned to read echocardiogram reports and surgical consent forms. They have sat in waiting rooms so many times that they know which chairs are softer and which vending machines still work.
They have done all of this while loving their child with an intensity that most people will never be called upon to feel. Not because they are extraordinary. Because they had no other option. Because love, when it is tested this way, does not get to choose how much it gives.
They are not asking for sympathy. They are asking for a system built to the scale of what they face. For research that improves the odds. For specialists still there when their child turns eighteen. For a country that has decided their child's life is worth the full weight of its attention.
Mr. President, they are your constituents. Every single one of the forty thousand families receiving a CHD diagnosis this year will vote in elections, pay taxes, raise children who will shape this country's future. They are not a special interest. They are America. And they are waiting to find out whether America sees them.
I want to say something personal before I close.
I did not come to this work through personal loss. I did not lose a child to congenital heart disease. I did not grow up with it. I came to it through a reckoning: the moment when I looked at the scale of this condition, at the families and the funding gap and the silence, and could not find a single reason that justified it.
I founded Heartbeat Forward in 2025. I have written three books for children with CHD and for the families who love them. I have no political party behind me. No industry funding. No personal grief to leverage. Forty thousand diagnoses happen every year. I refuse to let them go unseen.
These children cannot lobby. They cannot march. They cannot fund campaigns or send delegations to Washington. What they have is their lives, which are extraordinary and fragile and worth every dollar and every hour and every ounce of political will this country can bring to bear.
You have the most powerful platform in the world, Mr. President. I am asking you to use some of it for them.
History does not remember the speeches. It remembers the decisions. The funding that got appropriated. The proclamation that got signed. The researcher who got the grant and found the answer that saved the child who grew up to do something the world needed.
I am not asking you to solve congenital heart disease in a single term. I am asking you to decide that it deserves to be solved. That is all advocacy ever asks of power. Just the decision. Everything else follows from that.
Somewhere in America tonight, there is a child whose heart is not yet diagnosed. Whose parents do not yet know. Whose life is about to be reorganized around a word most of their neighbors have never heard.
That child cannot write this letter. So I did.
I am asking you to answer it.
This letter is open because it was written for everyone, not only the President.
If you have read it, you are now part of it. Share it. Send it to your representative. Say the words out loud to someone who has never heard of congenital heart disease.
The children this letter was written for cannot write their own. All they can do is grow, and fight, and trust that the adults around them are fighting too.
Every small heart deserves a loud voice. This is yours.
Adrian Adair Founder, Heartbeat Forward | Author | Advocate