BENEFITING: Pediatric Congenital Heart Association Inc
ORGANIZER: Pediatric Congenital Heart Association Inc
Give Knowledge. Give A Voice. Give Hope.
The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.”
Watch My Story
In January of 1982, I was born with Truncus Arteriosus, a Congenital Heart Defect in which the pulmonary artery and aorta do not separate during development and often, as in my case, includes a ventricular septal defect.
My first surgery was held off as long as possible, in order to give me time to grow. Doctors told my parents that had I been born a year earlier, the procedure wouldn’t have existed, but, at 18 months old, I had a pulmonary conduit and valve implantation.
During my hospital stay the doctors found a blood clot hiding behind my heart, forcing them to re-operate in ICU, I suffered a collapsed lung, and my kidneys and other organs began to shut down.
But after six weeks, I was released from Children’s Memorial with a trach tube in place to help me breathe. We needed a special generator installed at home, so my parents would be able to keep the tube clear at all times, and, in order to be able to talk, I figured out that I could close the hole in my throat by pressing my chin down to my chest.
After 3 months, the trach finally came out, but that Christmas, I was readmitted with pneumonia, as well as the Christmas after that.
After spending the first three years of my life in and out of the hospital, the most doctors could tell my parents about my long term future was that I would need a second surgery, likely by age 12, and that I wouldn’t be running any marathons.
While I didn’t last long on the basketball court and my President’s Test Mile Run took me half an hour, I had a very normal childhood. I was lucky to have good friends that knew my medical history, and though my trach scar was, at times, confused for a hickey or second belly button, I wasn’t ashamed to show my incisions. My grandma always called them my “badges of honor.”
As it turned out, I was 17 before the doctors decided I needed a conduit revision and valve replacement. I was a senior at Fenwick High School and my surgery was a week before homecoming. But it wasn’t all bad. This time I spent just one week in the hospital, and was back to school a month later. I was given a key to the teachers’ elevator, was excused from dreaded gym class for the rest of the year, and graduated on time.
Life seemed to hop right back on track. I moved into the dorms at DePaul the following fall and went about the business of becoming an adult. At some point I began to take for granted that that was it. In the back of my mind, sure, I knew there was a possibility of surgery in the future, but the distant future, when I was old. I had convinced myself I was fixed.
But there’s something I’ve learned as an adult: things rarely go as planned.
I like to say 30 is the magic number. That’s when, it seems, “normal” can begin to mean something else.
By 2012, for me it meant regular symptoms – lightheadedness, arrhythmias, shortness of breath, chest pain. It meant medication for the first time in my life. It meant uncertainty and worry, not only about my health, but for missing work, accumulating medical expenses, and the strain on my family, again.
In 2013 I had my first visit with an electrophysiologist. At that appointment, the doctor told me, at the age of 31, I needed a pacemaker. It took one full year before I agreed to the pacemaker procedure. Afterward, I felt better for a while, but it wasn’t long before the symptoms returned and new ones emerged.
In April of 2016, I was admitted to Lurie’s due to suspicious tracings from a holter monitor. We tried adjusting my medication, but symptoms persisted. So we decided on additional testing.
In June of 2016, I came into Lurie for a test in the cath lab, during which I went into v-tach, and my device was unable to pace me out of it. I lost consciousness and had to be shocked back into normal rhythm. A week after the initial test, I was discharged with an ICD (implantable Cardioverter Defibrilator) in place and new medication.
It’s now been a year since my last procedure, and things are going pretty well. But CHD is lifelong, and my future is quite uncertain. I will require care for the rest of my life and know further procedures are down the line. That’s why PCHA’s work is so important, and why I got involved.
PCHA provide resources, education, funding for research, advocacy, and support to the CHD community throughout the lifespan. So if you can find it in your heart :) please donate today, to help families and patients like me across the country!