A Medical Truth About Congenital Heart Disease, Delay, and Loss
Patience Is Not a Treatment Plan
— A Medical Truth About Congenital Heart Disease, Delay, and Loss
1.30.2026
14 - a personal blog
“You’re always in a rush.”
“Slow down.”
“Be patient,” they say.
As if patience is something you can choose
when your child’s heart is failing
and time is already slipping through your fingers.
But when your child is living on borrowed time,
there is no slowing down.
There is vigilance.
There is counting breaths in the dark.
There is memorizing numbers no parent should ever know.
There is listening for alarms, for changes in tone,
for the silence that feels too quiet.
The worrying doesn’t stop.
It settles into your bones.
The fear becomes routine.
The anxiety becomes background noise.
The panic waits — always waiting — just beneath the surface.
Because every moment feels fragile.
Every decision feels urgent.
Every delay feels dangerous.
This is congenital heart disease.
This is complex care.
It’s living inside timelines and contingency plans.
It’s knowing that “stable” doesn’t mean safe — it just means not crashing yet.
It’s being told to trust the process while watching the clock tick louder and louder.
In pediatric medicine, patience is often framed as wisdom.
As restraint.
As professionalism.
But patience assumes time is generous.
And time was not.
Time was narrowing.
Closing in.
Running out while we were told to wait, to hope, to breathe.
Delay is not neutral in congenital heart disease.
Waiting is not benign.
Inaction is not the absence of a decision — it is a decision, with consequences.
Families living inside complex pediatric illness are not rushing because they are emotional or irrational.
They are responding appropriately to a system where deterioration can be sudden, nonlinear, and irreversible.
Urgency is not panic.
Vigilance is not hysteria.
Advocacy is not interference.
It is informed survival.
Everyone said to be patient.
But patience is not a treatment plan.
It does not improve cardiac output.
It does not reverse pulmonary vascular disease.
It does not stop time-dependent failure.
Until one day,
there was nothing left to wait for.
Eventually, time did what it always does.
It ran out.
And when it did,
it took Ivy with it.
