How Our Story Began

My introduction to the world of congenital heart block, pacemakers, and Sjogren’s Syndrome began in April 19, 1999, my 2nd wedding anniversary. I was pregnant with my first child, and I went in for a routine 20-week ultrasound with my husband. We were excited first-time parents and were hoping to find out the sex our baby that day. We had agreed that if our child was a girl, her name would be Grace. I did now know how appropriate that name would actually be.

We found out the baby was a girl, and we also found out she had something seriously wrong with her heart. The ultrasound tech looked worried. A parade of physicians began—moving up various levels until we got to the Pediatric Cardiologist. The diagnosis was congenital heart block. We were told that she may not make it to term. Congestive heart failure was a possibility.

In the haze of that day, I was also told that usually this occurred when a mother has certain antibodies, SSA/Ro and/or SSB/La. These antibodies occur in people that have the conditions of Sjogren's Syndrome and/or Lupus. I was perfectly healthy, with no family history of either. I needed blood tests. Our story began...