My name is Lauren and three decades ago, when I was just weeks old, I fought back from almost certain death; but; if it were not for the beautiful scars that adorn my chest, no one would be the wiser.
I was born a seemingly normal infant, but my mother knew something was wrong long before a doctor would confirm a parent’s worst nightmare. My parents knew something wasn’t right, but trip after trip to my pediatrician's office was met by a doctor who time after time insisted I was fine. It was not until morning when I was 11 weeks old when my grunting attempts to breathe combined with a complexion that turned from pink to grey, that the same pediatrician who told my parents they were “overreacting”, insisted they rush me to the hospital for a STAT chest x-ray. It was then, a mother's instinct turned into a diagnosis; Tricuspid Atresia, or a missing right ventricle.
That diagnosis started the cascade that changed the trajectory of my life forever. I was rushed to Children’s Hospital of Michigan, where I had an emergency intervention heart catheterization to relieve the increasing pressure in my heart. This procedure, as well as medical interventions, allowed me to stabilize until I was strong enough for my first open-heart surgery, at 5 months old. A post-op course of RSV sent me back to the hospital; but thankfully, was the only setback on my road to recovery.
At 27 weeks, I had my Fontan procedure, which, back in 1989, had only been around for 20 years and came with unknown mortality and long-term survival rates. Though I needed longer than expected to wean off the ventilator; with few restrictions and daily medication therapy; I went on to lead a childhood like my peers. I participated in girl scouts, joined the local bowling team, and even dabbled in piano for a few years. My chronic heart disease become something I learned to live with, without it defining who I am.
It was not until I turned 18 that I had to once again, my life was paused to focus on my disease. After episodes of lightheadedness and chest discomfort, I was diagnosed with SuperVentricular Tachycardia, which would untimely result in the need for a cardiac ablation in my thirties.
Through all the unknowns of a life with CHD, I was able to fall in love, graduate college, get married, cross the country multiple times, all while advocating for those who live with my diagnosis.
My journey with CHD is not without its hurdles. My third open-heart surgery; the Fontan Revision/Conversion with Maze procedure is looming in the coming months, but I have hope that along with the support of my family and friends, the care of my nurses and doctors, I will not only continue to survive with my condition, I will live.