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My story

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I was born with a Coarctation of the Aorta and a bicuspid Aortic Valve.  At the time, 1974, I was the smallest baby to survive the initial surgery.  I was 5 days old and weighed roughly 3 pounds.  The coarctation was a complete obstruction, and as the ductus arteriosus closed, I turned blue from the waist down.  It was with the skill of a determined surgeon, and my own fighting spirit that I survived the surgery.  I needed a great deal of care, needing small amounts of formula every few hours.  My parents were quite a team.  I grew and gained weight slow and steady.

I did well, and when I was three and a half, I was able to have a further widening of the coarctation.  It was a "good enough" surgery until I grew more when a definitive surgery could be done.

Two angioplasties were done at Boston Childrends hospital when I was thirteen and seventeen to buy additional time.  I was able to live a pretty normal life.  My parents did not treat me any different from my siblings.  I would stop to rest when playing as I needed to do so.  Team sports were not something I could do, but intramural sports were fine, and I was allowed to rest as I needed to.  I knew I was different, but I found supportive classmates and teachers.

I was able to finish college and find employment as is usually done.  I had annual follow-up and multiple blood pressure meds.  My final surgery came when my bicuspid aortic valve started to fail when I was 39 years old.  With help from another skilled and courageous surgeon, I received an on-x carbon aortic valve and aortic bypass graft to provide an extra-anatomic aorta.  I now have better control of my blood pressure with a low dose of one blood pressure medicine along with warfarin.  I am able to walk without needing to rest for 2 miles.  So I am living a normal life..:)

I hope this helps give hope to parents of children waiting for surgery and people waiting for surgery.  God bless and please stay strong!










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