Lauren’s Journey

written by: Lauren (self)

Hi! My name is Lauren & I’m a 38 year old CHDer. I was born with Tricuspid Atresia, Hypoplastic Right Ventricle, a Large VSD, & multiple muscular ASDs.

I’ve had 3 open hearts so far in my life: the PA Banding at 5 months old, the Fontan & Glenn at 2yrs old, & the Fontan Revision (tune up of my original Fontan) with a Maze procedure, right atrium reduction, artery repair, & pacemaker implanted at age 34. I’ve also had multiple heart caths, a balloon atrial septostomy upon diagnosis at 11 weeks old, 2 cardiac ablations, hundreds of tests, hundreds of pokes, & so on. I also have other medical issues: Congenital Strabismus (have had 3 eye muscle surgeries), Avoidance Restrictive Food Intake Disorder, IBS, Factor V Leiden, Gilbert’s Syndrome, scoliosis, food allergies, Fontan Associated Liver Disease, PTSD, medical trauma, an anxiety disorder, thyroid issues, & Fontan Associated PLE.

Living with a Single Ventricle Fontan heart definitely isn’t always easy, but I continue to live as full of a life as I can despite whatever challenges I get thrown. Life might not always go as you hoped or planned especially with a single ventricle Fontan heart, but life can still be wonderful and beautiful even during hard time. I have so much to be grateful for. I take one day at a time and enjoy the simple things in life. I try to always have a hopeful heart, which “A Hopeful Heart” is one mottos that I put on CHD shirts & mugs I designed.

Growing up I played piano, was in family theater for many years, was in Girls Scouts for 4 years, played bowling from ages 4-18 (earned my High School varsity letter in bowling), etc. I have a BA in psychology, I’m a homemaker, a huge CHD & mental health advocate, like to collect coins (including pressed pennies), watch YouTube, enjoy watching movies & some TV shows (especially comedies & romances), enjoy couponing/bargain hunting, love to read & listen to music (love 80s & 90s music), enjoy organizing, like to write (hope to publish a memoir one day), still enjoy bowling, want to re-learn to play piano, love making people smile & laugh, enjoy learning about history & going to museums, etc.

I have been part of the CHD community sharing my life, offering support, building connections, advocating, & sharing my knowledge for over 17 years now which has been a blessing in my life and consider the CHD community my second family.

I am currently happily married to my amazing husband, Chris, who has been my rock for almost 14 years (together for almost 17).