At the age of two, a toddler’s biggest concern is what toy they are going to pick out at the store. However, this was not the main concern of junior Kenley Robinson at that age. Robinson went through her first open heart surgery before she turned two years old. She got open heart surgery in Aug. of 2007 where her doctors did a skin graft, taking skin from her lungs and using it to fill the holes in her heart. As her life has progressed, she now has metal filling the holes in her heart.
Robinson’s disease has not only affected her, it also affected her family.
“It [her heart disease] makes you have to disconcert everyday things,” Robinson’s mother Garrett Robinson said. “You just live in a constant state of disconcerting and it makes you sweat the small stuff.”
Robinson and her family had to learn how to cope with her disease and the symptoms that came along with it.
“Before my holes closed in my heart, I would still get very tired and I would sleep a lot during school,” Robinson said. “I would have to take certain medicine and growth medications to make me gain more weight because I was only 11 pounds by the time I was one.”
One time in middle school she had to go see the heart doctor. She had some pre-existing fast heartbeats and then her cardiologist decided to put her on a heart monitor.
“It was scary because I would have to tap the heart monitor to turn it on whenever I was having an episode,” Robinson said.
She realized she was starting to have an issue with her heart because she was experiencing a lot of pain when she would have to sit or lay down. Robinson also realized that she was getting very winded while doing small activities like going up the stairs or walking around her house. The tiny but important symptoms were of concern to Kenley and her family, and that’s how they knew to take her to the doctor to receive the heart monitor.
“I had some really fast heartbeats and it came with some chest pain and it scared me because it hurt,” Robinson said. “ I told my mom about it and then at my next cardiologist appointment she brought it up to the doctor. She [the doctor] decided to put me on a heart monitor and I realized that I was having this issue a few months prior to when I went to my checkup appointment.”
Robinson had a similar problem with her heart in the last month where it resulted in another trip to the hospital. She was able to lean on her friends and family during that time as they watched her overcome her heart scare.
“She perseveres through it [her heart disease] the best she can,” junior Emma Kate Rodrigue said. “Even though she has all these risks, she has handled it well.”
Her heart disease does not have as large of an impact on her life now as it did when she was younger; yet, there are still some obstacles she faces living with a heart disease.
Weightlifting is a major part of Robinson’s everyday life, and she even competes on the Maclay weightlifting team. In late October, she fainted and had a health scare similar to the one she had when she was in middle school. After that, she went to the cardiologist to make sure nothing was wrong and to get everything checked out. As Robinson is okay now, she still had to take a couple weeks off of weightlifting to recover since she was physically exhausted.
While her heart disease still affects her body physically, it also takes a toll on her mentally.
“Sometimes I get insecure about all the scars on my body,” Robinson said. “I get scared when I think about the possibilities of maybe needing another surgery or the next doctor visits, how they could say something could have gone wrong.”
Although having a heart disease has made an impact on Robinson’s life, she has learned how to adapt with the obstacles she is faced with..
“Sometimes I feel like I’m alone and everybody else has very good histories with their health,” Robinson said. “But then I remember that I had a very good team of doctors that follow me throughout my life to make sure I’m as healthy as I could be, and reassure me that everything’s gonna be okay and that I’m no different than anybody else.”
Robinson used to have to go see her doctor every six months, now she only has to go every two to three years. She goes to Shan’s Children Hospital in Gainesville.
“My surgery helped and overcome it [her heart disease] once I broke the mindset of thinking that something was severely wrong with me,” Robinson said. “Once I realized I was not gonna be limited, I felt a lot better and more comfortable with having it and accepting that it wasn’t going to impact my life as much.”
Now since her heart has gotten better, her life is not as severely impacted by her disease and she is able to live a normal life. She has only had one surgery and will currently not need another one. Although her heart disease has had a major impact on her life, Robinson has found the strength to persevere and live a healthy and fulfilling life.