Little Zippers

Dylan's Story

      Dylan was born on 6/10/99. He is my first child and my fiance's first son and Cory's little brother. At his 6-week checkup, Dylan's pediatrician heard a murmur and wanted us to go to the hospital for an echo. I really wasn't worried and even remember telling his father and doctor that I had had a murmur as a kid and had eventually grown out of it. I was positive it wasn't anything serious.

      After Dylan's echo, I went back to work as it was the end of my 6 week leave - however, after returning home after that first day back, we got a phone call that changed our lives forever. Dylan's pediatrician explained that his echo showed a diagnosis of hypertrophic cardiomyopathy and that we needed to take him to the University Hospital in Madison first thing Monday morning. This was the first time his pediatrician had even heard of this so he didn't have much information. I did a LOT of research on the internet that weekend, read many, many frightening things and slept very, very little, wondering if my little boy was going to fall asleep and not wake up! On Monday, Dylan had another echo and an EKG. He was started on a beta-blocker that has slowly been increased in dosage as he has grown.

      In January of 2001 Dylan suffered a stroke as a result of endocarditis. He spent 3 weeks in the PICU at University of Wisconsin's Children's Hospital. We're very thankful that only a year later he has almost completely recovered physically, cognitively and mentally! We still go to the PC every 6 months now and wait and watch and hope for the best. Even though Dylan has a "very large" obstruction (PC's words - one of these days I'll get around to deciphering his medical records!) and some valve leakage, he is a very active, engaging, intelligent and hilarious little boy who brings unbelievable amounts of joy to our lives.

      We are very grateful for the educated and proactive care Dylan has received, both from his pediatrician and the doctors at UW Hospital. I am personally extremely grateful for PDHeart and the knowledge and support that is so freely shared from others who've "been there."

Dee, Dylan's Mother