top of page
CHD-HLHS Survivor: Born with Half A Heart
Multi-Abuse & Medical Trauma Survivor
Health & Empowerment Coach:
Trauma Recovery Specialist
Social Activist: Disability & Child Rights
"A Trailblazing Voice for the Vulnerable"
Born with Complex Congenital Heart Disease, Stephanie Romer is one of the oldest people in the world living with half a heart, called HLHS: an often terminal heart condition.
Her story takes you through the first fourteen years of her life as she fights to survive-combating the relentless ticking time bomb in her chest and unwavering war on her mind. In the midst of ongoing abuse and medical traumas, she becomes hypervigilant of saving everyone but herself. Battling undiagnosed ADHD, debilitating anxiety, depression, and black-out rage, she questions authority and fights for control of her own body by taking life into her own hands. Tick...Tick...Tick...
*skip to 3:00 mins in for the Announcement!
TESTIMONIALS
"Stephanie articulately and eloquently, and at times very humorously, describes the dynamic and parallels of growing up in and out of the hospital while simultaneously dealing with various forms of abuse. I found her writing riveting, enthralling, heartbreaking, and I couldn’t put it down."
"This is such a well written book about living with a chronic illness while dealing with things no child should ever have to experience. Her story is heart wrenching, but her bravery is admirable. I laughed and cried throughout this book. Would recommend to anyone!"
BLOG
GALLERY
"I thought doctors were so cool and I loved their outfits! Doctors were heroes to me, whose coats were capes, and stethoscopes a tool for their magic powers.
I felt special that I had so many doctor friends.
I looked up to them and wanted to be a doctor one day so I could wear their silly slippers and fancy white coat."
-Stephanie Romer, Quieting The Clock: The Baby
Pic on Top Left: Pre-Fontan Party, 1989 | Pic on Top Right: Post-Fontan, 1990
