Growing Up With CHD:
What Survivors Want You to Know

Before We Begin

Before we talk about what CHD survivors want you to know, we need to talk about what most people do not know at all.

Most people have never heard of congenital heart disease. They do not know it is the most common birth defect in the world. They do not know it claims more infant lives than all childhood cancers combined. They do not know that the child sitting next to theirs in a classroom, or the young adult standing behind them in a grocery line, or the colleague they have lunch with every Thursday might be carrying a scar down the center of their chest from a surgery performed before they could walk.

That invisibility is not accidental. It is the product of decades of underinvestment in awareness, in research, in public education, in the cultural conversation that turns a medical condition into something the world understands and responds to with care.

CHD survivors have grown up inside that invisibility. They have had to decide, over and over again, whether to explain themselves to a world that was not looking for them. Whether to show the scar. Whether to say the words. Whether to let someone in to the part of their life that most people will never be asked to carry.

They Were Brave Before They Knew What Brave Meant

CHD survivors did not choose courage. Courage was chosen for them, before they were old enough to understand what was happening to their bodies, before they had language for what they were going through, before they could weigh the risk or sign the consent form or decide whether they were ready.

They were placed on operating tables as infants. Their chests were opened. Their hearts were held and repaired by hands that had spent years learning how. They came back from those tables and grew up, and went to school, and learned to read, and made friends, and fell in love, and built lives. And they did all of that while carrying, in the quiet of their own bodies, the knowledge that their heart is not like other hearts.

What CHD survivors want you to know, first and most fundamentally, is that the bravery you might admire in them was not a character trait they cultivated. It was a condition of their survival. And there is a difference between those two things that matters deeply.

The Scar Is Not the Whole Story

Many CHD survivors carry a visible scar down the center of their chest. It is called a sternotomy scar, and it is the mark left by open-heart surgery. For some survivors, it is a source of pride, a badge of what their body has been through and survived. For others, it is a source of complicated feelings, a daily reminder of difference, of vulnerability, of a childhood spent in hospital rooms while other children were somewhere else entirely.

The world tends to respond to the scar with one of two reactions. Either it looks away, uncomfortable with the reminder of mortality it represents. Or it says something well-meaning but reductive, like you should be proud of that, or that scar means you are a fighter.

The scar is real. But it is the surface of something much deeper. It is not the whole story. It is the beginning of one.

What They Want You to Stop Saying

CHD survivors are patient people by necessity. They have spent their lives explaining themselves to a world that did not come prepared with the right questions. But patience has its limits, and there are things said to CHD survivors, with the best of intentions, that land like stones in still water.

• "But you look so healthy." Congenital heart disease is not always visible. Many survivors look exactly like everyone else, which is precisely why they spend so much energy deciding whether to disclose their diagnosis. Looking healthy is not the same as being without a condition that requires lifelong management. Please do not confuse the two.
• "At least they fixed it." CHD is not fixed the way a broken bone is fixed. Surgical repair is a profound and life-giving intervention, but it is not a cure. Most CHD survivors will require ongoing cardiac monitoring, additional procedures, and specialized care for the rest of their lives. The surgery was the beginning of a lifelong relationship with their heart, not the end of one.
• "You are so strong. I could never handle that." You could. You would. Because you would not have a choice, just as they did not. Telling a CHD survivor that their strength is exceptional unintentionally suggests that their experience is incomprehensible, which makes them feel more alone, not less.
• "Everything happens for a reason." No child is born with a broken heart for a reason. CHD survivors do not need their suffering reframed into cosmic purpose. They need to be seen, supported, and taken seriously. That is enough. That is everything.
• "You should be grateful you survived." They are. They carry that gratitude every day alongside fear, alongside grief, alongside the complexity of a life shaped by something they never chose. Gratitude does not cancel the other things. It coexists with them.

The Childhood They Had and the One They Imagined

Ask a CHD survivor about their childhood and they will often pause before they answer. Not because they do not remember it, but because the answer is layered in ways that are hard to compress into casual conversation.

There were hospital stays during summers that other children spent at camp. There were restrictions on physical activity that made gym class a negotiation and sports a complicated territory. There were classmates who did not understand why they got tired faster, why they had to sit out, why they disappeared for stretches of time and came back quieter and more careful with themselves.

There were parents who watched them with a specific kind of attention, equal parts love and vigilance, the kind of gaze that sees a child and simultaneously monitors a condition. And there was the particular loneliness of being, in some essential way, the only person in the room who understood exactly what it cost to be in the room at all.

The Questions They Live With

Growing up with CHD means growing up alongside questions that most young people never have to face. Questions that do not resolve themselves neatly, that shift in weight and urgency as the years pass, that require a particular kind of emotional courage to carry without letting them consume everything.

Will I be able to have children? Is it safe? What do I tell someone I am falling in love with, and when, and how? What careers are open to me and which ones are not, and how do I grieve the ones that are not? What happens when I age? Will my repaired heart hold? What does the rest of my life look like, and who will be there to help me navigate the parts of it that are medically complicated?

These are not abstract questions. They are the lived interior of growing up with congenital heart disease. They do not appear in medical charts. They do not get addressed in cardiology appointments that are focused, necessarily, on the physical. They exist in the spaces between the clinical, in the quiet of late nights and the complexity of intimate relationships and the ordinary terror of planning a future when you have always known that futures are not guaranteed.

What They Have That Cannot Be Taught

This is the part of the essay where I want to be careful. Because there is a tendency, when writing about people who have survived difficult things, to romanticize the difficulty. To suggest that the suffering produced the gift, that the pain was worth it, that they should be grateful for the fire because of what it forged.

I do not believe that. CHD survivors did not need to be tested this way. The world would have been richer, not poorer, if they had been given ordinary hearts and ordinary childhoods and the freedom to develop their gifts without the cost.

And yet. And yet there is something real in what many survivors carry that is worth naming without romanticizing it. An understanding of their own body that most people never develop. A relationship with time that is different, more deliberate, more present, because they have always known that time is not something to be assumed. A capacity for empathy that comes from having needed it, from having been the person in the room who required a different kind of attention, and having felt the difference between receiving it and not.

A knowledge that life is not a given. That the ordinary day is a kind of miracle. That the people who love you, really love you, will sit with you in the hard parts and not look for the exit.

What They Want You to Do

CHD survivors are not asking for pity. They are not asking for applause. They are not asking you to treat them differently or to tiptoe around the reality of their lives. What they are asking for is simpler and more demanding than any of that.

They are asking to be known.

They are asking for a world that funds the research that will improve their long-term outcomes. That builds the adult cardiology infrastructure that will keep them well as they age. That integrates mental health support into their care from the beginning. That educates employers, educators, and insurers about what it means to live with a condition that is complex and lifelong and largely invisible.

They are asking for the conversation that this essay is trying to start. For people to read these words and carry them somewhere, into a conversation, into a vote, into a donation, into a phone call to a congressman, into a moment of genuine recognition when they meet a CHD survivor and understand, for the first time, what that person has been carrying.

To Every CHD Survivor Reading This

This section is for you.

I see you. Not the diagnosis. Not the scar. Not the surgical history or the medication list or the cardiology appointment schedule. You. The person who grew up carrying something most people will never understand, and who kept going anyway, and who woke up this morning and did it again.

Your life is not a cautionary tale. It is not an inspiration poster. It is not a story that exists to make other people feel grateful for their ordinary hearts. It is your story, whole and complicated and entirely yours, and it deserves to be told in full, on your terms, with all of its grief and all of its grace included.

You did not ask for this. You did not choose this. And the fact that you have built a life inside it anyway, the fact that you laugh and love and make plans and show up for the people who need you, is not something to take for granted.

It is something to witness. Something to honor. Something to fight for, in the policy rooms and the research labs and the congressional hearings and the public conversations that will determine what the next generation of CHD survivors inherits.

That is what Heartbeat Forward is for. That is what this work is for. That is what I am for.