My name is Jessica Vargas Miranda. I was born in Mexico City in 1982 as a healthy baby—according to medical standards at the time—until one day I developed bronchitis that led to severe pneumonia. I was losing weight drastically, so my parents took me to get a second medical opinion. That’s when I was diagnosed with congenital heart disease at the age of 7 months old. At 9 months, I had my first open heart surgery and since then, I have had three open heart surgeries with the last one being in 2013.

Hi, I'm Tom. Like many ACHD patients that underwent heart surgery, I have several scars on my body as a result. To make a long story short, I was born with ventricular septal defect and a coarctation of the aorta.

I had open heart surgery VSD repair in 1976 when I was six years old that left me with the classic scar on my chest, along with a scar in my right groin where they hooked me up to the heart-lung bypass machine.

I am a fiction writer. I like to write stories about people, their challenges, their fears, and joys. I do not like writing about myself, because for so long, my life was fiction. I told many tales in order to escape from my reality. I didn’t want to be someone with congenital heart disease, so like my stories, I changed the narrative. I now embrace my truth and advocate for those like myself, but I still find it difficult to write about myself.

However, 40 years ago, my life was saved, and I feel the need to acknowledge that moment and express my gratitude.

Two weeks after I was born, the doctor came rushing in with more doctors behind him during my check-up to discover I had a special heart. Appointment after appointments, they discovered I was born with an unrepairable ventricular septal defect. My first surgery was when I was five months old and my second surgery was when I was a year and five months old.

When I was an adult, my sinus node began to fail, so I had my third open heart surgery when I was 25 to get my pacemaker to keep the beat of my heart regular. The surgeries have given me so much potential to do things in life; if I didn’t have such a great team of doctors and support from family and friends, I wouldn’t have been able to get as far as I have in life.

This year marked my third consecutive year going to Washington D.C. for the Congenital Heart Legislative Conference. To be honest, I almost didn't attend. The Congenital Heart Futures Reauthorization Act was just signed into law a few months earlier and I was debating if I really should go advocate.

I recently moved, still had stuff in boxes, and had more than enough going on at work. Frankly, I just wanted to use the couple of days I had scheduled out of the office to sleep in, hangout with my cat and unpack some of my belongings. The one thing that kept me from cancelling was that I had a newly elected Representative for my district and I knew it was important to start early with making a connection, so I showed up!

My husband, Chris, and I have been together 10 years and married almost seven. Some days I still can’t believe I found my soulmate and very best friend. I’m so grateful and blessed to have him in my life.

When I was born 31 years ago I was supposedly a healthy baby girl, but at 10 weeks old and in heart failure, I was diagnosed with complex congenital heart defects: tricuspid atresia, hypoplastic right ventricle, and ventricular septal defect. Medical technology to help save us complex CHDers was still so “new,” and my parents were living moment to moment never dreaming that 31 years later I would be happily married and living a wonderful full life despite all the challenges I have faced.