“But you’re better now, right? I mean, you don’t look sick.”

I’ve heard these words from countless well-meaning people. While I am not “cured” and I don’t “look sick” (but thank you for the compliment), I have learned to fully embrace being a congenital heart defect survivor. Yes, it has its hardships, but it also teaches me to appreciate life, to find joy in the simplest of things, and value meaningful relationships. Above all things it creates a sense of hope.

I was born in 1987, before advances in fetal monitoring and early detection of heart defects. Upon emerging into the world, I was rushed out of the delivery room and life-flighted to Children’s Hospital of Pittsburgh. A doctor informed my mother that I had severe heart issues and she should prepare for me to not last through the night. In the days to
come my parents would learn that I had Tetralogy of Fallot (TOF), the same complex congenital heart defect as Jimmy Kimmel’s son. Unlike Kimmel’s son who had his first surgery shortly after birth, I was unable to have my open heart surgery until the age of three due to lack of medical advances. During the procedure, the surgeon discovered an additional malformation of mypulmonary valve.

For the next 15 years everything remained somewhat status quo. Then in 2008 at age 20, I began seeing a doctor in CHP’s new Adult Congenital Heart branch. I hadn’t been feeling my best, but I figured that was the life of a college student. Following my appointment, I learned that there was recent research that showed children born with Tetralogy of Fallot often neededadditional intervention as they grow into adulthood, or risk facing fatalconsequences. In my case, my pulmonary valve had become lax for some time and the result was lack of blood flow to the rest of my body as well as backflow of blood into the lower chamber of my heart. A month after my 21st birthday I received a Medtronic bioprosthetic valve. After my valve replacement, I regained so much of my life back; I had energy, I could
exercise without shortness of breath or chest pains.

But feeling good was short lived. My heart rate began to sky rocket, causing me to sometimes lose consciousness. It was discovered that the electrical circuit of my heart was malfunctioning. So in 2011, a pacemaker/defibrillator was implanted and has been one of the biggest reassurances in my life and I recently had the battery replaced last September.

Shortly after receiving my AICD, my husband and I asked my cardiologist about my ability to carry a child. After a lot more testing, I was granted a very hesitant green light with the understanding that there was a five percent chance pregnancy could negatively affect my heart. I was monitored consistently by both my cardiologist and Magee’s high-risk team and the pregnancy was uneventful until the third trimester. Despite beginning symptoms of heart failure, I insisted on carrying to full term and was induced just a few days shy of my 40th week. My son came into this world healthy and beautiful.

Soon after, my heart continued to respond negatively post delivery and I spent some time in Magee’s Intensive Care Unit. My cardiologists monitored me closely, hoping it would bounce back. But after six months, my heart was progressing toward heart failure. I was angry, because I had doneeverything right. I exercised, I ate well, I took my medications, I went on early medical leave to ensure my son’s and my safety, and still my heart failed
me.

My pity party ended when I realized I had a small human being looking to me as an example. So, I reverted back to embracing being a CHD survivor. Yes, my heart was stitched together and looking like a deflated balloon, but because of those stitches and scars I was ABLE to create life. I was ABLE to exercise and travel and enjoy life. Because of the continuous research and care provided by my doctors, I am able to not justlive, but thrive with minimal limitations.

Today, although I’m slower than the norm, I won’t let that hold me back. I’m passionate about nature, hiking, and adventuring. I’ve tried kick boxing, CrossFit, cycling. I’ve completed 5ks, 10ks, and mud races. I do my
best to push myself as a way to remind myself to be grateful for what I havebeen given. Yet, I’m patient with myself too.

It has taken me years to be brave enough to share my story in itsentirety. I started looking beyond myself and seeing it for what it really is.I am 32 years old now, and in less than thirty years, researchers and doctors
have collaborated to improve the lives of those with my heart condition. Jimmy Kimmel’s son has the advantage of not facing the trials and tribulations that myself and others had to face. And I don’t say that out of bitterness, but
I say it out of HOPE. Hope that the research will continue and solutions to more complex conditions will be found. Hope that we will continue to see a rise of adults not just living but thriving with congenital heart defects. Hope that one day when someone asks a Congenital Heart Survivor “but you’re better now, right?” they can respond
confidently with “Yes, I am.”

I’m sharing this with you because each year there are 40,000 children born with a congenital heart defect in the United States. Many are like me and need continuousintervention. Some require lifelong monitoring and some do not survive at all. The Children’s Heart Foundation is the country’s leading organization solely dedicated to funding CHD research that advances diagnosis, treatment and prevention. Awareness and funding are critical to turning hope for these future heart warriors into a reality.

I would not be here today without those who had the same hope before me.