Small Hearts, Loud Voices

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 about Nadia. She is twelve years old. Her brother Cole was born with Transposition of the Great Arteries and had open heart surgery at four days old. Nadia has never known a version of her family that did not include hospital bags by the front door and medication schedules on the refrigerator and parents whose attention moved in a direction she learned not to compete with. She loves Cole with everything she has. And she has been carrying a quiet loneliness since she was three years old that nobody thought to name. When you ask Nadia what she wants people to know about being a CHD sibling she says this. I just want people to ask me how I am doing sometimes. Not about Cole. About me. Just me. Because I am a person too and I have feelings too and sometimes it gets really lonely being the one who is always okay. Twelve years old. And more clarity about what she needs than most adults will ever find the courage to say out loud. Research consistently shows that siblings of children with chronic illness including congenital heart disease experience significantly elevated rates of anxiety, depression, and social isolation. They are more likely to suppress their own emotional needs. More likely to feel invisible inside their own families. More likely to describe a childhood defined by waiting rooms and whispered phone calls and the constant low hum of medical uncertainty. They did not receive the diagnosis. But they live inside it every single day. In this episode we talk about what the research tells us about CHD siblings and the psychological weight they carry. We sit with Nadia and hear her story with the honesty and the tenderness it deserves. We speak directly to every sibling who made themselves smaller so there would be more space for everyone else. And we give parents something practical and gentle they can do today to make sure every child in their family feels seen. Because congenital heart disease does not only belong to the child who has it. It belongs to the whole family. And every member of that family deserves to be held inside this conversation. Including the ones who watch. In this episode: The Fact: What research tells us about the siblings of CHD children, ambiguous loss, and the invisible weight they carry inside their own families. The Story: Nadia. Twelve years old. A brother she loves fiercely. A loneliness she has been carrying since she was three. And the one thing she has always wanted someone to ask her. The Encouragement: To the siblings who made themselves smaller. And to the parents who are trying to see every child in their family at the same time. The Call to Action: Ask a CHD sibling how they are doing today. Just them. Just that question. With your whole attention on the answer. Keywords: CHD siblings, congenital heart disease siblings, brothers and sisters of CHD children, sibling of heart patient, pediatric chronic illness siblings, ambiguous loss children, CHD family, congenital heart disease family, Transposition of the Great Arteries, TGA, CHD awareness, Heartbeat Forward, Adrian Adair, Small Hearts Loud Voices, CHD podcast, congenital heart disease podcast, pediatric cardiology, CHD emotional support, sibling mental health chronic illness Resources Visit heartbeatforward.org to share your story, learn about our mission, and support every member of the CHD family. If you are a CHD sibling with a story to tell, we want to hear it at heartbeatforward.org. Read The Quiet Majority by Adrian Adair, available now on Amazon. Small Hearts, Loud Voices is a production of Heartbeat Forward, a federally recognized 501(c)(3) nonprofit organization founded by Adrian Adair. Because every small heart... deserves a loud voice.

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 a blood draw and which parents need someone to just sit with them for a moment before the shift briefing begins. They are the pediatric cardiac nurses. The respiratory therapists. The child life specialists. The overnight technicians. The hospital chaplains. The unit secretaries who remember your name on your third visit and say it warmly because they know what it costs you to be back here again. They are the people who stay. And Episode 006 of Small Hearts, Loud Voices is entirely theirs. This episode is about Rosa. Eleven years in a pediatric cardiac unit. Hundreds of children. A woman who once sat on the floor of a family consultation room with a mother who could not stand up after receiving the worst news of her life, and stayed there on the floor beside her, because there was nowhere else to be. It is about what pediatric cardiac nursing actually demands. The specialized training. The emotional complexity. The impossible weight of caring for the most critically ill children in any hospital while also remembering that the child in the bed has a favorite cartoon and a stuffed animal and a name that deserves to be said with love. It is about what it costs to do this work. And why the people who do it keep coming back. Pediatric cardiac nursing is one of the most specialized and most demanding fields in all of nursing. These are professionals who carry the grief of loss and the joy of survival sometimes in the same shift. Who celebrate discharges with handmade signs in unit hallways and keep photographs of former patients on their phones years after they have gone home. They are underpaid. They are underrecognized. And they are absolutely irreplaceable. Today we recognize them. Today we say their name. Today we honor the work that happens in the rooms most people never see, done by the people most people never think to thank. If someone in a cardiac unit ever showed up for your child and your family in a moment when you needed it most, this episode will give you the words you have been looking for. And if you are one of the people who stays, this episode is for you. You have always deserved to hear this. We are just finally saying it out loud. In this episode: The Fact: What pediatric cardiac nursing actually demands, what it costs, and why these professionals are among the most specialized and most essential in all of healthcare. The Story: Rosa. Eleven years. Hundreds of children. A floor. A mother. And the kind of steadiness that changes everything. The Encouragement: To the nurses who carry these families long after discharge. And to the families who were carried. The Call to Action: Share the story of someone who showed up for your child and your family. Let them know their work rippled further than they will ever see. Keywords: pediatric cardiac nurses, congenital heart disease nurses, cardiac unit heroes, pediatric cardiology nursing, CHD nursing, pediatric cardiac intensive care, PCICU nurses, congenital heart disease, CHD, CHD awareness, Heartbeat Forward, Adrian Adair, Small Hearts Loud Voices, CHD podcast, congenital heart disease podcast, pediatric heart surgery nurses, CHD family support, cardiac unit staff, pediatric cardiac care Resources Visit heartbeatforward.org to share your story, learn about our mission, and support the children and families at the center of this work. If someone in a cardiac unit showed up for your family, share their story with the Heartbeat Forward community at heartbeatforward.org. Read The Quiet Majority by Adrian Adair, available now on Amazon. Small Hearts, Loud Voices is a production of Heartbeat Forward, a federally recognized 501(c)(3) nonprofit organization founded by Adrian Adair. Because every small heart... deserves a loud voice.

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 teeth and two hundred and forty seven Hot Wheels cars organized by color in a system that makes complete sense to him and to no one else. He was born with Atrioventricular Septal Defect, a hole between all four chambers of his heart. He has had two open heart surgeries. He has a scar that runs from the base of his throat to the center of his chest. He calls it his zipper. He named it himself when he was four. August is not a statistic. He is not a case study. He is not a symbol or a mascot or a poster child for anything. He is a nine year old boy who eats cereal for breakfast and argues with his sister about the remote control and thinks about his heart every single morning when he wakes up and nothing hurts. In this episode we talk about what the research tells us about CHD children and emotional intelligence. We sit with August and hear his story in his own words. We speak directly to every CHD child who has ever carried something quietly because they were afraid their honesty would make the people they love afraid. And we give you something real you can do today to make sure the children in your life feel heard. Because CHD children understand their own condition far earlier and far more deeply than most adults give them credit for. They have been through more by age five than most people face in a lifetime. They are empathetic and resilient and wise in ways that take your breath away. And they have been waiting for someone to stop talking long enough to listen. This episode is that moment. In this episode: The Fact: What research tells us about CHD children, emotional intelligence, resilience, and the quiet weight they carry. The Story: August. Nine years old. A zipper scar. Two hundred and forty seven Hot Wheels cars. And more wisdom about being alive than most adults will ever find. The Encouragement: Spoken directly to the children. Not the parents. Not the caregivers. The children themselves. The Call to Action: Share your story with the Heartbeat Forward community in your own words. Keywords: congenital heart disease children, CHD child story, CHD kids, living with congenital heart disease, Atrioventricular Septal Defect, AVSD, CHD awareness, CHD emotional resilience, pediatric heart disease, congenital heart defect child, CHD podcast, Small Hearts Loud Voices, Heartbeat Forward, Adrian Adair, congenital heart disease podcast, CHD family, heart surgery child, pediatric cardiology, CHD survivor story Resources Visit heartbeatforward.org to share your story, learn about our mission, and support the children and families who need it most. Read The Quiet Majority by Adrian Adair, available now on Amazon. Small Hearts, Loud Voices is a production of Heartbeat Forward, a federally recognized 501(c)(3) nonprofit organization founded by Adrian Adair. Because every small heart... deserves a loud voice.

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 valve, the aortic valve, the aorta itself. All of it critically small. All of it unable to do the work a heart was built to do. Without intervention, Hypoplastic Left Heart Syndrome is fatal within the first days of life. For decades it was considered incompatible with life entirely. Families were told there was nothing to be done. That changed in the 1980s when a series of three staged surgeries opened a door that had never existed before. The Norwood. The Glenn. The Fontan. Three surgeries performed in the first years of life that reconstruct a heart to function on a single ventricle. Not a cure. A reimagining of what a heart can do when it is given the chance to try. In Episode 004 of Small Hearts, Loud Voices we go deep into Hypoplastic Left Heart Syndrome. We talk about what HLHS actually means for your child's heart in plain, human, honest terms. We sit with a mother who received her daughter's diagnosis at a twenty week ultrasound and made the decision to fight. We offer encouragement for every HLHS family walking the hardest road in pediatric cardiology. And we give you something real you can do today to support the CHD community. Approximately one thousand babies are born with HLHS in the United States every single year. These children are here because someone fought for them. Because surgeons believed that half a heart was enough to build a life around. It was. And this episode is proof of that. If you are a parent who just received an HLHS diagnosis, this episode was made for you. If you are an HLHS survivor carrying three surgical scars and a story the world needs to hear, this episode was made for you. If you are a doctor, a nurse, a teacher, or a neighbor who wants to understand what these families are actually living through, this episode was made for you. Because these children are not half of anything. They are whole. They are extraordinary. And they deserve a world that knows their name. In this episode: The Fact: What Hypoplastic Left Heart Syndrome actually is, what it means for your child's heart, and how three staged surgeries changed everything. The Story: A mother, a twenty week ultrasound, a yellow room, and a four year old girl who sings her favorite song at the top of her lungs with absolutely no regard for the correct lyrics. The Encouragement: For every HLHS parent walking the hardest road and every survivor who was told their heart was not enough. The Call to Action: Learn it, say it, share it. Because awareness starts with a name. Keywords: Hypoplastic Left Heart Syndrome, HLHS, congenital heart disease, CHD, HLHS surgery, Norwood procedure, Glenn procedure, Fontan procedure, single ventricle heart, pediatric heart surgery, congenital heart defect, CHD awareness, HLHS diagnosis, HLHS parent, HLHS survivor, Heartbeat Forward, Adrian Adair, Small Hearts Loud Voices, CHD podcast, congenital heart disease podcast, pediatric cardiology, open heart surgery infant Resources Visit heartbeatforward.org to learn more about our mission, our care packages for children in cardiac units, and how you can support HLHS families and the broader CHD community. Read The Quiet Majority by Adrian Adair, available now on Amazon. Small Hearts, Loud Voices is a production of Heartbeat Forward, a federally recognized 501(c)(3) nonprofit organization founded by Adrian Adair. Because every small heart... deserves a loud voice.

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. In Episode 003 of Small Hearts, Loud Voices we step away from the medical terminology and sit inside the human experience of congenital heart disease. Because CHD is not just a diagnosis. It is a lifetime. It is multiple surgeries, multiple hospitalizations, multiple moments where a parent has to hand their child to a surgeon and walk back to a room and wait. The average child with a complex congenital heart defect will undergo multiple open heart surgeries before reaching adulthood. Approximately one million adults in the United States alone are currently living with congenital heart disease. These families are not rare. They are everywhere. And the waiting room is where their story lives when it is not living in an operating theater. We talk about what that room actually feels like. We sit with a father whose three year old daughter went into open heart surgery on a Tuesday morning wearing a hospital gown with yellow ducks on it. We offer encouragement for every parent who has ever held themselves together in that room by sheer love alone. And we give you something real you can do today to support the CHD community around you. If you are heading toward that room for the first time, this episode was made for you. If you have already been there and you are still carrying it, this episode was made for you. If you have never sat in a cardiac waiting room but you love someone who has, this episode will help you understand what they went through in a way that words alone rarely can. Because congenital heart disease does not end when the surgery is over. It lives in the waiting. In the watching. In the loving so fiercely it almost hurts to breathe. And every family carrying that weight deserves to feel seen. In this episode: The Fact: The lifelong reality of congenital heart disease and what it means for CHD families beyond the first surgery. The Story: A father. A three year old. A waiting room. And the longest four hours of his life. The Encouragement: For every parent who has ever held themselves together in a cardiac waiting room by sheer love alone. The Call to Action: Share your waiting room story with the Heartbeat Forward community.