By Mark Buttell
Living with scars has not always been the most ego-boosting part of my life. When you’re young, it’s fun to show your battle scars, and of course, most older folks were amazed that a 5-year-old was showing them scars from open-heart surgery. Back in the 1970s, it wasn’t very common, and looking back on it, it really was a miracle to have been through life-threatening operations to repair Tetralogy of Fallot (ToF) at such a young age.
I remember family members always pulling up my shirt to show their friends what I had gone through. Visual is a big thing. Seeing is believing, and especially in this day and age, if we don’t see it with our own eyes, it must not have happened. So these friends and folks who got to see these scars had me pinpointed from the first day they met me. They knew all about me and my story. I grew up in a small town of fewer than 3,000 people, and I represented the one in 4,000 born with ToF.
I had a scar that went from under my left chest area, all the way around to the back. This was typically done not to harm the breast bone, and because I was 4 months old, it was easier to get to the heart from the side. I am not sure if they still do it this way for infants, but this was the first scar that marked me for life! I wonder how my parents made it through seeing these imperfections on their infant, wondering what would come next. I’m sure my parents worried about me rolling on my side, but of course, at 4 months of age, you aren’t rolling anywhere.
My second scar was straight up and down on my chest area, which is the typical procedure area. It begins right below the collarbone area and ends at the top of my stomach with drainage dots on each side of the scar from the drainage tubes that are inserted during the operation to remove fluid. During those days, they also hooked you up to a heart/lung machine via the main artery of your leg and lower stomach area. By doing this, they made another horizontal scar just above my left leg. This scar is no longer visible, but to me, I know it was a life-saving incision that pumped blood and oxygen throughout that small 4-year-old during the operation. The heart is not actually pumping during the surgery; the heart/lung machine is doing all the work. Good thing there wasn’t a power outage from a thunderstorm!
I remember, for quite some time, I could feel the metal staples that were used to basically staple my breastbone back together then let muscle and tissue form over it as I grew older. You could say the surgeon is also a seamstress, working on patching up tears on humans instead of clothes. Good thing duct tape wasn’t used (then again, surgical tape is commonly used)!
Life went on, but then came adolescence and puberty. Things get really messed up during those periods of your life. I came to the point in my life where it didn’t feel cool to have battle scars. I always felt like I was seen as the different kid that some others might be afraid of — especially girls! So, for many years (even up to the past few), I was very embarrassed to take my shirt off to get a tan. I did all I could to avoid showing my scars.
My body was patched together nicely, but I didn’t want to show the world my scars again. I felt that if anyone saw my deformed body, they would either stare or not want to talk to me. In my mind, all I could think, especially as a teenager and young adult, was: What nice girl would want to really get to know a boy with scars? A boy who might not be around long enough to grow old with them? In my mind, they’d think, “Why should I even start a relationship with this kid who has heart problems? He’s a risk!”
Back then, I thought life would be short. That became the worst way of living my younger years. It’s a horrible way to feel, and selfish as well. For any young kids worried about the problem of having a minor scar, remember, it really is okay to be “marked for life.” If you have any self-esteem issues, get online to find others like you and chat with them so you don’t feel so alone. Find someone to talk to so they can help you get through the feelings of being unique. Make it right early in life so you can become a powerful presence and instrumental in society. It’s waiting for you! Be proud of the battles you survived. You are nothing less than a winner and a fighter.
Today is a different day, and I have a different way of thinking about things. I’m pushing over 50, and man, I am living! Living to see my kids grow with my wife next to me. How cool is that? The pool is a blast! Shirt off, chasing kids and trying to do flips that turn into flops off the diving board. Man, I am wild some days!
Why do I keep bringing these things up? Because it’s what can happen mentally, physically and emotionally as you see yourself — and possibly your own child — grow. As a parent, I want you to watch your children and know that these stages of “physical appearance instability” may take place. Please educate your child early and often so they are truly aware of who they are and what they can become.
“Normal” people seeing scars can crush a kid’s self esteem in a flash. It doesn’t have to be heart surgery scars; it could be limb loss, burns, birthmarks, or any other kind of mark. Fortunately, in this day and age, you can find other kids with CHD and they can become friends. Parents can talk to each other about their trials, tribulations and similar worries. We are very lucky to have internet chats and websites to connect people affected by these diseases.
Being emotional and having low self esteem can and will happen during the early years of this disease. Just to make it clear, I even see it, time and time again, with so many “normal kids” who lack internal drive or motivation. We, as a society, have become complacent and expect kids to be zombies sitting on a couch, spending countless hours watching screens on their iPads and iPhones. My generation is smart enough to know that being active with neighbors’ kids and riding bikes and going to the pool or ballgames is extremely valuable for kids’ wellness. Get your kids involved with other kids to do activities. It goes a long way in life. Fortunately, in Caledonia, we are constantly driven to find our children’s talents, especially in sports, robotics and music. We let them roll with it. You will find amazing results in this crazy world we live in.
As an adult CHD patient, be grateful! Be alive, and live as best you can with what you have! Life throws curveballs every day, and you will find you can hit them. You will also miss them, but always be ready for the things I have explained. Know that it is normal! You are normal and you are real because your scars are proof to others that CHD is beatable. It is who you are and always will be. Live as best you know how with the gift you’ve been given with the hands of a surgeon that, by the grace of God, pieced you back together with battle scars that tell one hell of a great story for all the world to hear!