Carly
Every Scar Has A Story
My name is Carly Donohue. I am a young 28 year old woman with CHD, specifically Tetrology of Fallot (which includes four different heart defects).
I was born on July 18, 1992, however, during that time they didn’t have the testing or ultrasounds that they do now. At birth I was diagnosed with Noonan Syndrome, which is a genetic syndrome. Some of the characteristics include curly hair, short stature, learning difficulties/processing issues, and heart problems. I in fact have all of these characteristics.
In July of 1993 I had my first open surgery to repair all the defects which was successful.
As child, in high school, and even into college I played a ton of sports (soccer, t-ball, gymnastics, swam varsity for two years, played varsity water polo for one, and intramural co-ed softball and Women’s flag football), and just enjoyed life. I never let me size or my heart issues keep me from doing what all of my peers were doing or what I loved. My parents always taught me that Noonan Syndrome may explain why I may do things differently but it was to never be used as an excuse not to try.
It was up until I turned 19 did I know that things were about to change. I was getting ready to transition into Adult Cardiac Care when my pediatric cardiologist said to my mom and I, “don’t be surprised if she has to have a surgery later down the road.” However, that road would be closer than I expected.
In August of 2013, I went for my annual cardiac appointment and echocardiogram before returning to Biola University to start my junior year of college. The echocardiogram showed “things” that were concerning and I would be scheduled for a cardiac MRI in November (the weekend of Thanksgiving).
November came and I was told by my Adult Cardiologist that I would be needing another open heart surgery. I was absolutely crushed and didn’t know what to think. I had all of the emotions that one could have (anger, sadness, confusion; the list can go on).
However, my parents and older brother were with me through it all. Packing up and taking the spring semester off from college, the scheduling and rescheduling of my surgery as it was originally supposed to be February 14th (Valentine’s Day) and was then rescheduled for March 29th (Good Friday), to the five month recovery.
My surgery was a success, yet, three years later in the summer of 2016 I would have to be put on blood thinners. When going to another annual cardiac appointment they would find a blood clot on the pulmonary valve that they had replaced.
My journey is still not over as I am gearing up to have another (less invasive) surgery later this year to have my pulmonary valve replaced again via catheterization (a valve deployment).
Through this journey I have found to love others and have compassion for those around me. I have found my voice, being able advocate for myself when needed. I have also graduated from college and have been able to receive my Master’s degree in Child Life. And I have learned that God always has a bigger and better plan for our lives than we do.
The reason I reached out to the Brett Boyer Foundation was to share my story and ultimately my testimony. I want to give hope to the CHD and Noonan Syndrome community that even though this will be a life long journey, living with CHD can be beautiful. People will never understand what it is like to go through what children and adults with Congenital Heart Disease go through until they have walked the path. Whether that is a parent, grandparent, aunt, uncle, sibling, husband, wife, the list can go on. I wouldn’t be who I am today if it weren’t for my loving family or my Lord and Savior, Jesus Christ who ultimately lead me here and gave me the heart that I do.
We all have a story to share and this is mine! One of disappointment, resilience, hope, and love.