WHAT IS CHD?
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 multiple.
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 still in 2021 remains unknown.
THERE IS NO CURE...YET...
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.
It was way past time to be heard...
is a Blog that was created to give a voice to CHD Adults, to provide a platform for mental health education, inspiration, and healing through Adult CHD Survivor's stories who pave the way for the CHD Community.
Our stories help:
CHD adults, teens, children, parents, loved ones, the CHD medical community, and the public
learn the reality of what CHD patients go through.
For the first time in history, Complex CHD patients are living into adulthood.
As cool as that sounds...this leaves CHD Adults in uncharted territories, with no answers. As a result we are guinea pigs for experimental surgeries, tests, medications, and more - with our mental health being completely ignored...until now.
FOUNDER, STEPHANIE ROMER: After years of her own research interviewing hundreds of CHD Adults and discovering there is no outlet or organization that existed to talk about Taboo Subjects such as mental health affects of CHD; HLHS Survivor Founded CHD Legacy Publishing, LLC. As a result of Stephanie Romer's relentless public Advocacy work, blog, website, YouTube Videos, and speaking at countless conferences, many CHD organizations and other Advocates began speaking out about Mental Health and Neurological issues that come along with CHD over the past few years. She is now a published Author of her Memoir - QUIETING THE CLOCK: MEMOIR OF GIRL FACING DEATH AND CHASING FREEDOM.