Stehanie Romer, HLHS, Hypoplastic Left Heart Syndrome, Congenital Heart Disease, CHD, Congenitl Heart Defect, disability housing, crisis, CHD Legacy, Advocate, Activist, Survivor, Warrior, Heart Warrior, Fontan, Crisis Cicatrix, Author, Podcast, Julie Mae Morefield, Nina Kash, Andrew Paukstitus, disability, Sarah Miller, Katie Greene, Caitlyn MacKay, Samantha Davis, Becca Atherton, Amanda Harper, Kayla, Tiffany Wasiuk, Jasmine Gilgosch, Amber McMillan

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CHD stands for Congenital Heart Defect or Disease. 

Congenital means born with.


CHD has nothing to do with clogged arteries or acquired heart disease.

We were born with hearts that have valves, ventricles, arteries, etc that formed really weird, if at all.

Each malformation is an individual heart defect.

Some of us have one defect, some of us have up to 10. 

Defects range in severity.

With more severe combinations, many refer to it as Congenital Heart Disease.

We have multiple heart surgeries throughout our lives.

Those living with single ventricle hearts are now living into adulthood for the first time, 

and the life expectancy is unknown.


FOR THOSE WHO SURVIVE INTO TEEN AND ADULTHOOD, many terrifying struggles come.

The heart surgeries we had as children to keep us alive, for an unknown amount of years,

begin to get old and therefore, wear, tear, and put us back into heart failure.


This is when we require new valves, pacemakers, and more.

Many of us live in heart failure for years as  we wait on a transplant list for hearts, livers, and lungs.


This comes with devastating struggles, and often takes a toll on mental health.

This is why CHD Legacy was born.