Stehanie Romer, HLHS, Crisis Cicatrix, Podcast, Author, Hypoplastic Left Heart Syndrome, Congenital Heart Disease, CHD, Congenitl Heart Defect, CHD Legacy, Advocate, Activist, Survivor, Warrior, Heart Warrior, Fontan

  CARDIAC CREW   

PODCAST 

Stehanie Romer, HLHS, Crisis Cicatrix, Podcast, Author, Hypoplastic Left Heart Syndrome, Congenital Heart Disease, CHD, Congenitl Heart Defect, CHD Legacy, Advocate, Activist, Survivor, Warrior, Heart Warrior, Fontan
About Us
Stephanie Romer is a 31-year-old Hypoplastic Left Heart Syndrome (HLHS) survivor. She was born in Dayton, Ohio in 1985 and had 3 heart surgeries at Cincinnati, Children's by Doctor Warren Bailey between 1986-1988.  Stephanie was one of the original Fontan patients in 1988.  She is a retired personal assistant, business manager, and nanny and caregiver of 12 years for special needs children and adults. She is currently a CHD Advocate, Researcher, Motivational Speaker and Writer who is working on her first book.  She  is also the Director of an Adult CHD Patient Group in Tampa, FL.
Crisis Cicatrix is a 24-year-old Hypoplastic Left Heart Syndrome (HLHS) survivor.  Born in 1993, he had his Norwood in ‘93, Hemi-Fontan in ‘94, and Fontan in ’97, at the Children’s Hospital of Philadelphia (CHOP).  He is currently a music and film producer based in Southeast Florida.
Stehanie Romer, HLHS, Crisis Cicatrix, Podcast, Author, Hypoplastic Left Heart Syndrome, Congenital Heart Disease, CHD, Congenitl Heart Defect, CHD Legacy, Advocate, Activist, Survivor, Warrior, Heart Warrior, Fontan
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.
Show More

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

Chronic Illness Coaching: 

Illness | Wellness | Trauma

  • Facebook
  • Twitter
  • YouTube
  • Instagram

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