Most people have a heartbeat that sounds like “thump-thump,” but mine is just one “thump.” See, I was born without the left ventricle of my heart, called “pulmonary atresia.” It was repaired over the course of multiple surgeries; I had my first open-heart operation when I was just 5 days old, the second around 8 or 9 months old and the third when I was 2 ½-years-old. They rewired some of my arteries and veins to make up for the missing ventricle. I’ve also had eye surgery, a hernia repair and a few other procedures along the way that added up to about 13 procedures before I was 14-years old, and likely more to come. But, I know I’ll be okay through it all, because I am in the best hands!
Most recently, my gastroenterologist, Dr. William Wenner, discovered that my liver, spleen and gallbladder had begun to swell a little. This can happen when there is not enough blood flow from your heart. I’m being monitored with ultrasounds and blood work, and I’ve also started seeing Penn State Health geneticist, Dr. Roger Ladda, who diagnosed me with Ehler Danlos syndrome; quite possibly related to my original heart condition.
There are some things in life that I do miss out on, unfortunately. But, hey, just remember, I’ve been through more than a dozen medical procedures already and I cannot even drive yet! I have had to find ways to work around my medical conditions, and in doing so, have found other things that I love. One of those is music. I love listening to it and playing it—all different types of music; the Beatles are among my favorites. Thanks to the Penn State Children’s Hospital care team with me from the beginning, my life goes on and my love of music carries me through! My passion is something that I share with my family, as well; it has also helped me find new things I can learn to love. In my two years of high school, I’ve been involved in concert and marching band, playing piano, xylophone and bells.
The list of providers and staff I’m thankful for at Penn State Children’s Hospital is long. Dr. John Myers, my cardiothoracic surgeon; my cardiologist, Dr. Vincent Aluquin; Dr. Wenner; and all the nurses and technicians, like Jolene who administers my echocardiogram. My mom knows she can always call if she has questions. I hope maybe I can help other kids who are going through similar things by telling my story.
In the future, I’d like to pursue a career in some sort of mechanics—automotive or audio, I’m not sure yet. Ever since I can remember, I’ve always been outside with my dad in the garage—always working with him and wanting to help him (although, if you ask him, I may not have always been a help, but I had the best intentions!). Now we’re working on an old Mustang. I’m also really interested in the entertainment technology program at Millersville University, which Clair Global of Rock Lititz helped to develop. I’ve got lots of time to figure out what type of career I’d like to pursue!
I could not have gotten through any of this without my family—my mom, Kanah; dad, Mark; and brother, Luke. With the confidence and expertise of the Penn State Children’s Hospital team guiding us through, my family has always been by my side saying, “No matter what this is or how hard it’s going to be, we’ll always be here as a family and get through it together. There’s nothing we can’t conquer as a family.” The challenges I’ve faced have helped me be more considerate of others and want to help others. You never know what someone else is going through. It’s definitely helped make me a bit more mature and figure out how to tackle obstacles in life and work around them. Something we can all take to heart.