Meet First & Second Generation CHD Survivors & Pioneers who are knocking down barriers and squashing statistics,  while blindly teaching ourselves, loved ones, doctors, and the public how we have created a life with little to no resources.

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Read & Share the empowering stories of Adult Pioneers Paving the Way!

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WHAT IS CHD?

Congenital Heart Disease survivors are now living into adulthood ...

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Submit Your Story

Submit your unfiltered, untold story of life as an Adult with CHD...

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FOUNDER

Stephanie Romer, is one of the oldest living HLHS Survivors in history...

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.
Stress Tests
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.
Oldest 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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