This is the third in a series of blogs submitted by congenital heart disease survivors or parents for Congenital Heart Defect Awareness Week, which is celebrated February 7-14 each year.
By Tierney Wilks
Almost every kid does not look forward to the second half of the school year. The joy of Christmas is over, extended holiday breaks are practically non-existent, and walking in the bitter cold at seven in the morning was the last thing we wanted to do. But, the second half did have its perks, such as random days out of school like Presidents Day, a random day out of school full of movie marathons on your sofa and stuffing your face with junk food.
Unfortunately, my day didn’t go anything like this. As I sat down on the couch to start my Pretty Little Liars marathon, I started feeling funny. Usually when I felt this way, I was doing something active or it was humid outside. Neither was the case. I called my mom to tell her my asthma was acting up and that I couldn’t find my inhaler. I described the feeling as if it were “a stack of books on my chest.”
The next thing you know, I was on my way to the doctor’s office who then sent me to the emergency room. It was my first time being there and I was freaking out from the way it was depicted on TV. EKGs were ran, blood was tested and doctors kept running in and out of the room asking if I was having chest pains. After hours of waiting, me and my mom left with just a suggestion to a cardiologist. I then went to get a CAT scan and to see a cardiologist, who turned out to be one of the best in the city, and that was when the truth was revealed. I had a congenital heart defect.
My mom came up to me in the kitchen while I was doing homework to break the news to me and that I needed immediate open heart surgery. I was furious. 16 years of going to the doctor for yearly check-ups and there was no sign of this. 16 years of a heart defect being a complete mystery. 16 years for the top heart surgeon at LeBonheur to tell me I would not have lasted if I had one more chest pain. I avoided friends and family until the very last second because I wasn’t sure of how the reactions would be and I also was too devastated to even tell them. Although they took it very hard, I received a ton of support which really helped when it was time to go into surgery.
The morning of Good Friday finally came; it was time for my surgery. I was freaking out as the clock hit 7:50, 7:55, and then finally 8:00 am. I was hysterical and they instantly gave me medicine, which totally worked. I thought I was on a cloud, babbling random things, and next thing you know I was out like a light. I woke up to the voices of family members. Some were giving encouraging words while others were weeping because they thought it was the end. After the horror moments of ICU, things started to finally calm down and it finally hit me. I actually survived an open heart surgery (WHOA!)
As I struggled to recover, it was eventually time for me to head back to school. I walked down the halls of White Station High School for the first time in weeks. I was greeted with eyes staring at me, awkward smiles, and “whispers” that I could definitely hear. Almost everyone in that school, a school with 2500 students, knew me as the girl who just had heart surgery. One of my theatre classmates thought I died and thought I was a ghost when she saw me at my locker. I sat in the library instead of going to classes because I wasn’t able to handle the three flights of stairs yet. Our librarian Ms. Doyle gave me a ton of support, but the kids in there still gave me strange looks. I felt like an outsider for the rest of the school year.
Two months later I went to Cardiac Kids Camp. Cardiac Kids Camp is a camp for heart patients between the ages of 8-16. I was amazed at all of the kids who have gone through something similar to me. All of them found out about their condition when they were babies and everyone had a story different from the person next to them. Most of my bunk mates told stories about the many heart surgeries they had and proudly repped their scars by wearing V-neck shirts that I was too afraid to buy. I learned about different heart conditions but most importantly my own. Not only was this a major learning experience and a confident booster, it was also the most fun that I have had in a long time. We zip lined through trees, swam every day, rode on a pontoon boat and so many more things that would take forever to name.
Many people think that something is “wrong” with us or they feel sorry that we were born this way. Discovering this heart condition at the age of 16 has been the most eye opening experience for me and an overall blessing. We have struggled with something that people could not dream about and have lived to tell the tale. I have grown to love and embrace my scar and I have met lifelong friends along the way. It has inspired my career decision to be a nurse to inspire other kids dealing with the same situation. I AM a congenital heart patient. I AM an advocate heart disease awareness. I AM a survivor.