I was born with a ventricular septal defect and coarctation of the aorta and repaired in 1970. I never had a problem since then and was able to go through labor three times. My son Kevin (now 14) was diagnosed with aortic stenosis at birth and my older daughter Ali was diagnosed with the same a month later. I was told that they probably would never need surgery and hung on to that hope.

Kevin's heart began to enlarge at the age of 10 but medications counteracted this. Kevin had his colon removed in 2002. He began having episodes of arrhythmias afterwards as well as dehydration due to the surgery. It seemed that everything that could go wrong did. We were told that he needed surgery on his heart immediately but it was able to be put off for two weeks so that he could recover from the colectomy. He had the Ross Procedure (valve replacement) done on 8-12-2002. One minute he's being monitored constantly with the crash cart outside his room and the next they are sending him home four hours away.

As wonderful as the doctors are, they will never know what it's like to constantly be a triage nurse for your child, trying to figure out if each ache and pain is heart related or nothing at all. We are still trying to relax from the traumatic experience surrounding his surgery and allow him to be a teenager.