“What happened to you there?” was a question I frequently received from kids and adults alike growing up. During my teenage years, I remember trying to wear shirts that would go practically to my neck so they would cover my scar and I could avoid the question (not that I minded telling what happened; I was just not a fan of the way it was asked sometimes).
I even remember being in my 20s, getting a massage and the guy telling me, as if I didn’t know, that I had two scars on my back (which were from shunts being inserted at the age of 1 day and 18 months). I refrained, but almost acted like I didn’t know and wanted to make a big scene!
It all boils down to this: I was born with tetralogy of Fallot. I was born without a pulmonary valve, so the corrective surgery that I had at almost age 4 was not going to be my last. Having children was not a guarantee and, as a young girl who wanted to be a mom one day, something I had to face.
I ended up having two beautiful children in my early thirties after my second corrective surgery, where an Edwards Lifesciences pulmonary valve was inserted. I will be celebrating nine years in June 2023! There were a few restrictions that I had and still have, but nothing that holds me back.
I am not the only one in my family with heart issues. My father had an aortic aneurysm and his aortic valve replaced—we received the exact same type, just one month apart! One of his sisters had ASD, which was discovered later in life, and sadly she passed away in the early 1970s in her late twenties. My father also has another sister whose aortic stenosis was discovered much later in life. My 7-year-old has a heart murmur, but has been checked out and so far, has a normal functioning heart.
So despite cardiologists being a regular part of some of our health check routines, there is lots to be thankful for and it has made our family more aware of the importance of taking care of our hearts! And it is a story I don’t mind sharing.
Sometimes I am asked if I feel mad or sad that I was born “this way” and the basic answer is “no.” But yes, sometimes I do feel frustrated (so glad there is ACHA here to advocate for us!) or worry about my future. Will I be around long enough to see grandchildren? How many valve replacements will I have? These are just a few of my many concerns.
Yet, my story has shaped who I am and how I see life. I see my heart defect as a blessing, and now I am sharing my story with my children, who can understand a little why Mami has a big scar on her chest :)
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