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

HOME
What is CHD?
VOICES OF CHD
CONTACT
More...

There’s Nothing Here...

We can’t find the page you’re looking for.
Check the URL, or head back home.

1st Generation Parents

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 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...

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 & 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

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

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

Learning Disabilities & CHD

CHD and Learning disability...Stephanie Romer writes about her experiences and thoughts.

Illness or Drug Addict

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

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

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.

Show More

Do you have a coach to help guide you through your individual or family struggles?

Chronic Illness Coaching:

Illness | Wellness | Trauma

Copyright © 2021 | Website Design by Stephanie Romer, Founder of CHD Legacy Publishing

Please see Terms & Conditions for all privacy policies and disclosures.