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 2020 remains unknown.

THERE IS NO CURE.

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...

Voices of CHD   

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:  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 has never been paid for any of her Advocacy work and asks to show your support that you please Like, Follow & Leave a Review if she has educated, inspired, or coached you along in your healing journey.

1st Generation Parents
First generation parents of complex and single ventricle congenital heart disease and defect survivors. They are the soldiers who taught us how to fight. Thank you.
Heart Caths & Warrior Blood
Heart catheterizations are a minor invasive procedure to check out hearts to see from the inside. It is comforting to be able to see a heart cath lab before you have a catherization to ease your mind. Stephanie Romer writes about her experiences.
What to Tell A CHD Child...
Keeping the innocence. How much and what should I tell my baby or child with congenital heart disease or defect. Parents, advocates, and doctors can discuss this together as well. Stephanie Romer shares her thoughts on this.
CHD Brain & ADHD
CHD Brain damage comes out in many forms - Executive Functioning issues that can look like and be diagnosed as ADHD, Learning Disabilities, Behavioral Issues, and more...Stephanie Romer writes about her experiences.
34 yr old HLHS Survivor
HLHS warrior turns 34 years old. Hypoplastic Left Heart Syndrome. Congenital heart disease survivor. Stephanie Romer's 34th Birthday - 2019.
Life with 5 CHD's
Stephanie Romer Living and loving life with five congenital heart defects. Hypoplastic Left Heart Syndrome, Transposition of the great arteries, atrial septal defect, ventricular septal defect, mitral valve stenosis
Learning Disabilities & CHD
CHD and Learning disability...Stephanie Romer writes about her experiences and thoughts.
Illness or Drug Addict
Treated like a drug addict in the Emergency Room for being young with a chronic, invisible illness. Stephanie Romer writes about her experiences.
mestresstest_edited
With CHD we have to go through constant testing. Stress tests is one of those. Living with Congenital Heart Disease and HLHS - Hypoplastic Left Heart Syndrome - makes it more difficult. Stephanie Romer writes about her experiences.
31 yr old HLHS Survivor Making Waves
Stephanie Romer story by Project Heart living with half of a heart, twice the fight. Living with HLHS, TGA, ASD, VSD, MVS. Advice for parents and congenital heart disease and defect survivors, patients, doctors, cardiologist.
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