My story

• by uvagershwin
• 2013-02-24 08:02:22
• General Posting
• 785 views
• 3 comments

I realized that I don't know a lot of the newer folks, so here is my story!
My name is Sydney and I've been a member of PM Club since 2007 I believe.
I was actually diagnosed with my heart defect - congenital complete isolated atrioventricular block - around this time 19 years ago. My mother was 16 weeks pregnant. The doctor thought that based on my heart beat, I was a boy. But my parents had just been told that I was a girl. The doctor took another look at the ultrasounds and said to my mother, "That heart beat is way too slow for a girl." So off to UVa we went - the first of countless trips. It was there that I was diagnosed with complete heart block, a defect in which the electrical impulse that makes the heart beat is stopped along the conduction pathways and results in a very slow, irregular heart beat. It was beating at less than half the normal rate. My mother also learned that she had an autoimmune disorder that caused my heart problem. After those two devastating discoveries, the doctors gave my parents 3 options: terminate the pregnancy (because I wasn't supposed to survive it), compassionate care (the parents take the baby home and wait for nature to take its course), or pacemaker implantation shortly after birth. They chose the latter. I was born 17 days before due date, a Thursday, at 1:03 in the afternoon. At 4:00 on Friday morning, I had a temporary pacemaker placed to "see if I would make it through the weekend." The procedure was successful so that Monday I had a temporary pacemaker implanted. My parents were not able to hold me until I was 10 days old. Finally, on my original due date, I was allowed to go home (although they didn't want me to because I was still very small and not eating much). I am 18 now. I've had 2 surgeries since and will have them throughout my life, unless we fund some awesome research and they come up with something different! ♥