1/16/2013 11:12 AM
A fall out of bed when I was four years old led to an ER visit to evaluate a potential concussion. That internist turned to my mother and said,” Tell me about your daughter's heart." And thus we had the first indication that I was put together a little differently.
I have Shone's syndrome - my coarcted aorta was repaired shortly after that ER visit, my bicuspid aortic semilunar valve isn't standard, but works well enough as do the too-small muscles on my mitral valve. I've also had valve-sparing aortic root replacement when my aortic dilation reached a point that the risks of rupture outweighed the risks of surgery.
I've been fortunate to be able to remain active and employed - I have a full-time job and a part-time job, a spouse, and two children, both of who I was lucky enough to carry to term. My CHD has been a part of my life for as long as I can remember, but my parents did a good job of giving me the skills to negotiate my own care and I continue to have loving support from both family and friends.
I have made the active choice not to let my CHD define who I am, but rather to incorporate it as an element in my overall identity. Even if I wanted to, the scars on my body would be hard to hide so why bother? I continue to be seen by CHD specialists and though I know that will always be part of my life, I also know that I will always be so much more.