Surviving CHD: When Life Becomes Minute by Minute
When you tell someone your child was in the hospital, most people picture what they know.
A quick visit. A few tests. A doctor coming in with answers. A little worry, a little waiting, and then going home.
But the ICU is different.
The ICU doesn’t feel like a place you visit. It feels like a world you get pulled into — a world with alarms, monitors, numbers, and constant vigilance. A world where “good news” can change in a heartbeat. A world where you learn, very quickly, that surviving isn’t a single moment… it’s a thousand moments stacked on top of each other.
The ICU roller coaster no one understands until they live it
In the ICU, you can’t always live day by day.
Sometimes you live hour by hour.
Sometimes minute by minute.
Your child can look stable — even “great” — and then suddenly, the room shifts. The tone changes. People move faster. Voices sharpen. You see the crash cart. You hear urgency in the hallway. You watch teams run in like they’ve done this a thousand times… because they have.
And all you can do is stand there while your whole world becomes a single heartbeat.
That’s the part so many people don’t understand when heart parents say, “We were in the hospital.” It wasn’t just staying somewhere unfamiliar. It was living inside uncertainty. It was learning that the plan can change at any time. It was making peace with the fact that there’s no clear path — no simple timeline — no predictable steps.
Every CHD journey is different… even when the diagnosis is the same
One of the hardest parts of CHD is that even when two children share the same heart defect, their journeys can look completely different.
They heal differently.
They respond differently.
They face different complications.
They fight different battles.
Some children survive cardiac arrest.
Some survive brain bleeds.
Some fight through lungs that won’t cooperate.
Some only survive because of life-saving machines — like ECMO, holding them steady when their body can’t.
These aren’t “bumps in the road.”
They are mountains.
They are moments that change a family forever.
They are chapters written in courage and fear and hope.
They are battles that deserve to be recognized for what they truly are.
Survivors don’t just “bounce back” — they rebuild
When the world hears “survivor,” they often think it’s over. Like the storm has passed.
But CHD survivors live with a kind of resilience most people will never have to understand.
Survival can mean follow-up appointments.
Med changes.
Scars.
Monitoring.
Trauma that shows up when you least expect it.
And strength that keeps growing… because it has to.
Heart warriors don’t just return to “normal.”
They rebuild.
And so do the families who fight right beside them.
Parents and caregivers don’t just watch survival happen — they live it too. They learn the language of monitors and meds. They learn how to stay calm while their insides are screaming. They learn how to celebrate progress while still being terrified of setbacks. They become experts in bravery without ever signing up for the job.
In the ICU, your love becomes work. Your hope becomes a muscle. Your endurance becomes a way of life.
Why we wear it
That’s why Heart Month matters so much to families like ours.
Not because we need to “raise awareness” like a trend.
But because we need the world to understand that these children are not just patients.
They are fighters.
They are survivors.
They are living proof that strength can be tiny and still unstoppable.
And every step they overcome should be celebrated. Remembered. Shared.
That’s also why I created this new set of designs for Heart Month — words that finally match the magnitude of what these kids (and families) have lived through:
The gears aren’t just a graphic — they’re a symbol.
Of repairs.
Of resilience.
Of the way a heart warrior’s life is held together by courage, medical miracles, and a strength that keeps turning forward even after the hardest days.
This Heart Month, wear red for meaning
If you’ve ever lived in the ICU — if you’ve ever held your breath at an alarm, prayed through a procedure, or counted life in minutes — this is for you.
For the warriors.
For the survivors.
For the families who fought beside them.
This Heart Month, wear something that tells the truth:
They are strong. They are brave. They are warriors.
***The inspiration for this blog post came from Kaitlin, a CHD mama who has lived this journey and understands what it means to overcome so much, but will never forget the fight. Thank you for not only inspiring this design but helping me remember how far all of these warriors have come.