I had been studying for my last college exam when a friend from the Adult Congenital Heart Association asked if I would become involved with a “Congenital Heart Disease (CHD) Assembly” in Northern New Jersey. The assembly was for third to fifth graders, and their school was doing a week-long CHD awareness/fundraising event prior to the assembly. Just over 22 years ago, I was born with six complex congenital heart defects, and I underwent three open heart surgeries before I was two. I was within weeks of finishing my nursing degree when I was asked about the assembly, so I was eager to get involved with an event so close to my heart not only personally, but also professionally.
Preparing for the assembly was more difficult than I anticipated. Sure, I can easily explain my heart defects and their lifelong implications, but I’ve never explained my CHD to children. I tried to place myself in their shoes—what interests did I have at that age? How much did I know about the function of the heart? With help from various members of the ACHA, I was able to build a presentation that kept the students engaged and curious concerning CHD.
One of the most difficult tasks was explaining what a congenital heart defect is. I asked them to imagine a house in place of their heart. Sometimes there may be holes in the walls (septal defects/PFO/PDA), there may be doors missing or locked shut (atresia/stenosis of a valve), rooms may be too small or nonexistent (hypoplastic left/right heart syndrome), and hallways may be attached to the wrong rooms (transposition of the great arteries). How could the house function properly if any of those abnormalities existed?
For instance, if there are holes in a wall, things may fall out or “mix” into the next room. A door that is locked won’t allow you into places you need to go, like the kitchen to get food! A room that is too small may not allow enough space for everything that needs to be in it, and the hallways attached to the wrong rooms will lead you to the wrong place. By explaining CHDs in this manner, the students were able to grasp a simple description of the very complex issues that 1 in 100 individuals are born with.
The most important message I wanted to get across wasn’t the anatomical structure of the heart; instead, the main focus was acceptance of our differences. During the assembly, we focused on common implications of CHD including medication schedules, weakened immune systems, exercise intolerance, and scars. For instance, individuals with CHD can become easily tired. I personally was restricted from strenuous activities when I was in fifth grade. Many people in my gym classes would tell me I was lucky I didn’t have to run with them, while I felt like the most unlucky student in the class, watching from the sidelines.
I spoke to the students about “invisible illnesses,” and how it’s important to understand that their friends may have to rest during gym class—not because they’re unwilling to do the exercise, but because they’re unable to. We talked about scars, and how they’re not something to be ashamed of. Whether it be from an open heart surgery (or three), or from falling off of a bike, scars show you overcame something that made you stronger. I was surprised with the number of students who were eager to show me their scars from minor accidents, in exchange for a closer look at mine.
The assembly went better than I anticipated. And the school generously raised over $600 to go directly towards the Adult Congenital Heart Association—how heartwarming! The students asked great questions including, “Can you drink soda?”; “Will you have your scar forever?”; and “Is congenital heart disease sad?” I was impressed at how engaged they were, and how eager they seemed to answer my questions.
I can remember walking into the Performing Arts Center in my school and listening to guest speakers over the years. I don’t remember what they all talked about, but the messages they shared shaped me into who I am today. I’m hopeful that although these students may not understand my single ventricle anatomy, they’ll have a new perspective on acceptance—and that is truly what matters.
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