Small Hearts, Loud Voices

There is a conversation happening in hundreds of thousands of households across this country right now. It is happening at kitchen tables at two in the morning. On the phone with insurance companies that put families on hold for forty five minutes and then transfer them to someone who cannot help. In the parking lots of hospitals where parents sit in their cars after appointments and try to figure...

There is someone in the background of every CHD story. They were there the morning their sibling went to the hospital and did not come home for six weeks. They learned to be quiet when the phone rang because it might be the doctor. They figured out early that the needs of their family were arranged around a center of gravity they did not choose and could not change. They are the siblings. And almo...

There is someone already in the room when your family arrives. Before the diagnosis has fully landed. Before you know the name of the surgeon or the timeline of the surgery or what any of this is going to mean for your child and your family and the life you thought you were living. Someone is already there. They know the layout of the unit. They know the names of the children in every bed. They kn...

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...

There are words that stop time the moment you hear them. Hypoplastic Left Heart Syndrome. Most parents cannot spell it yet when they first hear it. Most cannot say it without stumbling. But they write it down on whatever piece of paper is closest because they need it to be real. They need something to hold onto in a room that has suddenly stopped making sense. HLHS means a baby is born with the le...

There is a room that every family touched by congenital heart disease knows by heart. The chairs are uncomfortable. The lighting is fluorescent. The coffee is bad. And time moves in a way that makes no sense at all. It is the waiting room. And if you have ever sat in one during your child's heart surgery, you know that no amount of words will ever fully capture what that experience does to a perso...

There is a moment that changes everything. A baby is born. And something is wrong. The lips are blue. The oxygen is low. And within hours a parent is handed a diagnosis they cannot yet pronounce. A name they will spend the rest of their lives learning to carry. Tetralogy of Fallot. It is one of the most common complex congenital heart defects in the world. It accounts for approximately ten percent...

SMALL HEARTS, LOUD VOICES Episode 001 — "One in One Hundred" Episode Notes There is a number that stopped me the first time I heard it. One in one hundred. That is how many babies are born with congenital heart disease. Every single day. In every country. In every hospital. In every family that thought they were ready for what was coming next. One in one hundred. It is the most common birth defect...