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!