Small Hearts, Loud Voices
Small Hearts, Loud Voices Hosted by Adrian Adair | A Heartbeat Forward Podcast There are children in hospitals right now with scars on their chests and mountains on their shoulders. Children who were diagnosed before they ever took their first breath. Children who have been through more surgeries, more monitoring, more uncertainty than most adults will face in a lifetime. Children who are brave in ways the world rarely stops to notice. This podcast is for them. Small Hearts, Loud Voices is a show about congenital heart disease, the most common birth defect in the world, and the children who live...
The Bill No One Talks About: The Financial Burden of CHD Families
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 out how to make the numbers work.
It is the financial conversation. The one CHD families are having alone in the dark. The one nobody puts...
The Ones Who Watch: The Siblings of CHD Children
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 almost nobody is talking about them.
Episode 007 of Small Hearts, Loud Voices changes that.
This episode is...
The People Who Stay: Honoring the Nurses of Pediatric Cardiac Units
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 know which baby sleeps better on their left side and which toddler needs their favorite song before...
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...
Hypoplastic Left Heart Syndrome: What Every Parent Needs to Know
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 left side of their heart severely underdeveloped. In some cases barely formed at all. The left ventricle, the mitral...
The Waiting Room
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 person. What it asks of you. What it takes. What it leaves behind.
This episode is for you.
<...Tetralogy of Fallot: What Every Parent Needs to Know
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 of all congenital heart disease cases. And yet most people, including most new parents sitting in that hospital room for the...
One in One Hundred
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 in the world. It affects more children every year than all childhood cancers combined. And mo...
