Updated: Nov 6, 2021
" I am that 1 in 100"
My Heart Journey
Did you know that 1 in 100 babies are born with a congenital heart defect? That means that most likely someone you know and care about has experienced CHD. For me, I am that 1 in 100 who has been living with heart complications from the time I was born. This is my CHD Story.
I have a heart condition known as Ebstein’s Anamoly in addition to a narrowing in my aortic arch. To put it simply, the right side of my heart is enlarged, and that causes my heart’s valves to leak. Let’s just say, my supply of oxygen is a bit less than other people’s due to my unique valves. 😶
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My CHD Story began from the time I was born. At just 4 days old, I had my first open-heart surgery where I had one of the world's top three surgeons at the time operating on my little heart. How cool is that? You may have noticed that my scar is not down the middle of my chest. Most CHD'ers have a scar from their open-heart surgery on their front, almost like a zipper down their chest. My doctor's actually decided to go through my side rather than down my front. (The significance of this I will talk about in future blog posts) During this first surgery, the doctors attempted to widen my aortic arch which was severely constricted.
Following that first surgery, I had a couple more heart surgeries which included an angioplasty at 2 months old and another open heart surgery at 7 months old. My second open heart surgery was needed because my aortic arch had narrowed by almost 70% since my previous surgery, and this was another attempt to fix that narrowing.
Fun fact, actually! In this surgery, the doctors used my subclavian artery in my left arm to create a flap in my aortic arch. Now, when I go into the doctor’s offices’s I have to remember to tell them to take my pulse and blood pressure in my right arm because more often than not, you can't get a read using my left arm. LOL. One time when I forgot to inform a new doctor of this little quirk, he looked at me quite puzzled proclaiming… “Are you alive?” 😂 Oh, the joys of being 1 in 100. Makes my CHD story even more fun! 😉
Growing up I always knew I had gone through a lot at an early age (and so had my parents), but because it was before I could remember, I didn't really get the magnitude of my CHD story. There were times of course, that I felt the limitations of my heart like when I couldn't catch my breath after some simple running drills or when my lips would turn VERY blue after being in the cold for a split second. Those were little items that I remembered that made me different, but from the outside, I appeared to be just like any of my peers. It wasn't until my freshman year of high school that my heart condition became VERY real for me.
Arrhythmia Throws a Wrench
A common condition developed in conjunction with Ebstein's Anamoly is arrhythmia. In my seventh-grade year, I developed what is known as Supra-ventricular Tachycardia. My heart had literally grown an extra node in its electrical pathway. Crazy right? This extra node caused my heartbeats to speed up rapidly when exercising or with the slightest adrenaline rush. Literally, you could see my heart beating out of my chest at times, and sometimes I would even blackout during episodes due to my breathlessness. I was put on medication to prevent the episodes, and that seemed to keep my heart calm for a while. Then the summer of my seventh grade year I had an ablation to burn the extra node off of my heart, and life seemed to return to normal. I returned to playing volleyball, basketball, and softball, and did not experience further complications. That is... until my heart grew ANOTHER node, and I was back to square one. This time the doctors put me on stronger medication and left my heart be for the time being.
Then it happened... I had just had the best game of my basketball career with 7 three-pointers and 30 points. As a freshman, I had earned a swing spot on the varsity team, and that night I had swung down to the JV game. Our team was facing a top-ranked opponent in the state that night. My game was on fire, but so was my heart. It was beating SO FAST. After that JV game, I remember laying on the locker room floor trying to calm my heart with breathing exercises. My medication wasn't working to stop the attack this time. But I had no time. I had to suit up for the varsity game and get ready for warmups. I made it through varsity warm-ups and sat excitedly on the bench cheering on my teammates as the intense game began. It was a neck and neck game. Swoosh! I stood up fast cheering... and my world started spinning. I weakly sat back down as my whole body felt like it went into shock. My heart was beating rapid-fire, but it wasn't like any other episode I had ever experienced. This one was different. I caught the attention of our athletic trainer, Ty, who came and put a hand on my back. "Everything okay?" he asked. I remember shaking my head weakly as he then guided me behind the bench to lay down and try to calm my heart. I remember flashes of seeing my dad's, Ty's, and my concerned teammates above me, but to be honest it was only in blips.
The next thing I remember was getting wheeled into an ambulance and having paramedics surround me with questions trying to keep me awake. I breathlessly answered their questions, but it felt like the world around me was going black fast. One of the last memories I remember of the ambulance ride was when the paramedic hollered "CODE BLUE" into his radio. I would later learn that this code indicates a life-threatening emergency. I remember slightly waking up at the arrival of the emergency room for more questions, an IV, and cord hookups. But after that, it all went completely dark.
I was defibrillated 3 times in order to shock my heart back into its normal rhythm, but each attempt was unsuccessful. After those attempts, I was given a very heavy dose of an anti-arrhythmic drug through my IV to subdue my heart. Thankfully, the drug gradually subdued my heart down from its 200 beats per minute and its nearness to cardiac arrest. Close call.
The next month, I had another ablation where they actually froze the extra node off of my heart this time. Finally, they were successful. To this day, I haven't had any more heart episodes beyond the occasional shortness of breath or fatigue, but I am always cautious in my daily activities. I still have my annual heart check-up, and I am grateful for each day. I am blessed that even after that scary heart event my freshman year of high school, I was still able to continue athletics and later go on to pursue a collegiate athletic career in volleyball (my freshman year) and track (all four years).
That one heart episode in high school truly put my heart condition in perspective for me as a young adult. My CHD story has made me resilient which has served me well over the years as I navigated life as a college athlete and now as a business owner. I am thrilled to share more of my CHD story and promote awareness through this blog. My goal is not only to share lifestyle inspiration but to ultimately "Empower The Victory in Little Beating Hearts" in EVERYTHING I do. Empower those other 1 in 100 CHD'ers!
My heart story has given me so much in this life, and I always want to have a heart that beats for others. Therefore, my promise to you is that 50% of any blogging commissions I make from promotions and partnerships will go towards CHD Organizations and Foundations that support heart families and research.
Thank you for your support and for being a part of my 1 in 100 story! Let's have hearts that beat for others together! 💓