“Strength does not come from physical capacity. It comes from an indomitable will.”- Gandhi
When you are born into a world with the odds stacked against you, you have two ways of looking at it: you can either let it consume you, or face it head on.
My story begins at 7 days old I was diagnosed with a congenital heart defect called Hypoplastic Left Heart Syndrome. HLHS is a lethal malformation of the heart where the left side is so severely underdeveloped that it does not function. My parents were told that the chances of me having a good quality of life were so slim that they suggested my parents go the route of compassionate care and let me die peacefully. My parents did not accept that option. They looked for other options and found Children’s Hospital of Philadelphia performing a set of experimental open-heart surgeries that would re-route my circulatory system, so my body could function with only the right side of my heart. I was born in upstate NY, so Philadelphia was not too far away. I was immediately taken to Philadelphia and underwent my first open heart surgery, called the Norwood, at 9 days old. I underwent the hemi-fontan at 7 months old and my fontan at 13 months old. After my family and doctors thought I was out of the woods, I went into congestive heart failure at 2.5 years old and underwent my fourth open-heart surgery to open my ASD. After that, it was full steam ahead.
My parents were originally told that they should channel my energies into the arts because the likelihood I would be able to participate in sports with half of a heart was very slim. My surgeon had told my parents to let me set my own limits and that is just what they did.
I began gymnastics at 3.5 years old after asking my mom if I could start classes. After my parents had a conversation with my surgeon on the risks, I began training and continued on as a high level competitive gymnast for 14 years. After suffering a career ending injury, I turned to high school sports to fill my competitive nature. I never considered my heart a handicap. I played high school soccer, track and field, ski racing and participated in freestyle skiing. I have always enjoyed pushing the limits and exceeding what doctors thought I had been capable of. I kept reaching milestones and my heart was at “rock star” function as the cardiologists liked to say.
May of 2015 I was at lunch with my father at the Rootbeer Stand off Kemper Road in Cincinnati when all of the sudden I lost feeling on my right side and actually bit my hand on accident while eating. I looked ahead and saw everything swirling and as I turned to my dad I lost the ability to form words. I looked him straight in the eyes with fear in my own as I was just babbling like a baby. It didn’t take long to for me to be able to speak again but I had known what just happened. I just had a stroke. I was rushed to the hospital where it was confirmed. Just a few days prior I was studying calculus and now I was no longer able to do simple math. This was my biggest moment of reflection that I had ever had in my life. It took almost a year to begin feeling back to “Meghan.” The confidence and faith I had in myself was tested every step of the way.
Now at 24 years old I am just about to start back up at University of Cincinnati studying Neuroscience. Along with my bachelors, I am also undergoing classes to get my phlebotomy certificate by January. As for work, I am coaching where I used to train at Cincinnati Gymnastics Academy as the team level 4 floor coach. Aside from coaching, I am a patient advocate and focus on the needs in cardiac transitional care. I travel and speak at different events and medical conferences on the patient perspective of hospital care, as well as the importance of self-advocacy. I am seen at Cincinnati Children’s Hospital yearly in the ACHD clinic, however, I usually end up in the ER a few times a year aside from my one visit. My cardiologist is Dr. Gruschen Veldtman.
Throughout my life I have had the opportunity to have a multitude of moments of reflection after being faced with the constant reality of death. For my entire life hospitalizations, cardiac procedures, doctor’s visits, and numerous tests have been a big part of my life. I have had moments where I am scared I won’t walk out of the hospital, or that this will be the cardiology visit where they tell me that my heart is failing. It is very easy to make my heart my identity, but it is not. My heart defect and strokes are a part of what makes me who I am; it is not all that I am. However, I am grateful for these experiences because I feel I truly understand the meaning of life and really living. To me, quality of life is not determined by your physical ability, it is determined by how you choose to live your life.
I choose to live my life by jumping out of airplanes and taking cross-country road trips with only 36 hours of planning time. I choose to drive to Colorado by myself just to do a backflip off a ski jump. I choose to move to Oregon for a summer where I don’t know anyone just to spend my summer skiing. I choose to live a life full of taken opportunities instead of missed chances. I choose to feel the adrenaline pumping through my veins because I want to experience life and redefine what quality of life truly is.