A small child sitting in the back of the car, only five years old, and suddenly his heartbeat is uncountable. His mother notices and they rush to the hospital. In a confused daze the sleepy kid asks “Mommy, can I come in with you?” She says nothing and rushes him into the ER. It is here where he is diagnosed with Wolff-Parkinson-White syndrome and his life changes drastically.

My name is Aster, this is my story as a kid growing up with Wolff-Parkinson-White syndrome (WPW), a condition that affects only 1 of every 10,000 people worldwide. Although it isn’t always fatal, WPW can be life-threatening. WPW is a condition that affects the heart. People with the condition have an extra electric channel in their hearts. People with WPW experience things called “episodes”, which are most commonly identified by Supraventricular Tachycardia, or SVT, which are elongated periods of abnormally high heart rate. 

Because of this, people with WPW often have many limitations on what they’re allowed to do and consume. For me, I was completely banned from caffeinated drinks. In addition to that, at my 10-year-old check-up, I was told to stay away from high-cardio sports until I had the surgery. I didn’t always follow these rules, but for the most part, I was stuck in a caffeine-less, slow-moving prison. 

When I was diagnosed, they didn’t operate right away. Instead, they decided to wait until my heart was larger. Finally, they decided on March 15th, 2017, a Wednesday unlike any other for my operation date. The day before was nerve-racking. I remember going to basketball practice against my doctor’s advice, and watching as all the girls on my team were called to the coach’s desk, one by one. I was confused, and when I asked the girls on my team what he was doing, they all had different stories. Then, I got the sweetest surprise of my life. My entire team, including my coach, had signed rubber ducks and had made a card wishing me the best of luck. I went to bed that night with a smile on my face and a warm feeling in my heart. 

My smile quickly faded the next day, however, when I was awoken at 5 in the morning. Despite my protests for more sleep, we drove to the hospital. After what felt like ages of tests and needles, it was finally time. I was more nervous than I had ever been in my life. After a quick pep talk from my doctor, Dr. Spar, and a huge hug from my mother, it was time for surgery. 

After 14 hours, which felt like nothing for me, but must have felt like an eternity for my anxiety-ridden parents, I woke up. Feeling groggier than ever, I almost missed Dr. Spar walking in with a defeated look on his face. Confused, I asked how long I had been under. Dr. Spar told me that it had been 14 hours and that the surgery was only supposed to take 4-5 hours. 

Then, he told me the most shocking and devastating news possible. His voice was shaky. “I’m very sorry, but we were unsuccessful…”. He continued talking, but I didn’t hear a single word he said. The word “unsuccessful” raced through my mind over and over again. The color drained from my face.

I felt like crying.

Finally, I came back to my senses. Dr. Spar told me not to worry, as if I could. He explained that they were going to do the surgery again after I hit puberty when my heart grew larger. I didn’t care; I wanted this done and over with, I was tired of not being allowed to drink caffeine or play high-cardio sports. It didn’t matter though, there was nothing they could do. It was too risky. The healing process was brutal. The surgical site itself was fine, but thanks to my awful luck and miscommunication between doctors, I had an allergic reaction to the tape they used. My skin was swollen and itchy, and I felt like tearing it off. I rested at home that day, but after my insistent begging, my mother let me go back to school on Friday. Friday was rough, but my class greeted me with hugs and high-fives, as well as a pile of cards they had spent all of art class making. I had never felt so special, and I still have the cards. 

The doctors were right, after puberty, my heart grew large enough, and I am scheduled to get the surgery again in November of this year. Still, Every year, I get several tests and check-ups to make sure everything is okay and that we can go on with the scheduled date for the surgery. At the very end of August of this year, I had my yearly evaluation, and that day, everything was fine. However, just a week or two later, on September 5th, I had just woken up, and I felt the squeeze in my chest; my warning that says “Hey, you’re going into SVT”. It was then that I made the stupidest decision of my life; I blew it off. 

My episode lasted for 10 hours before I finally spoke up and was rushed to the hospital. I made it just in time. My heart rate was at 269bpm, and no matter how many different things they asked me to do, the lowest it went was 253. Finally, they decided the best course of action was to inject me with a drug called Adenosine. Adenosine is a drug that “resets” your heart rate. It has no side effects, but while it is working the feeling is similar to ringing out a towel, except that towel is your heart. It was terrifying, but all of the doctors were very sweet and calmed me down. 

Luckily, they managed to get my heart rate back down to a normal level. There was no permanent damage, but it was still an insane experience. They kept me under observation for 2 hours, to make sure my heart rate didn’t go back up. They banned me from any cardio-inducing activities for a short period of time. They checked to see if there were any earlier dates for me to get my surgery, but there weren’t, so I’m still scheduled to get the surgery on November 4th.  

I’m still nervous, but at least I know this time what to expect. The chances of failure are low, but they’re not low enough to give me peace of mind. I’m worried, but I plan on conquering this. I’m excited to not let it run my life any longer. Energy drinks, here I come!