Monday, April 25, 2011

In the Beginning

Our little miracle Carter was diagnosed with Hypoplastic Left Heart Syndrome in utero. After four healthy children I had no idea how to react to this complex diagnosis. Completely unexpected and totally unprepared,  we forged ahead.  It has been a long, difficult, and wondrous journey.

In the early years we chronicled our journey with Caring Bridges and I found it to be therapeutic. No longer afraid of the journey itself, I've learned to accept things as they are, and embrace the beautiful gift we've been given. Along the way, I've learned a few things, but the most important lesson stands out above all - today's kid with Hypoplastic Left Heart Syndrome can survive - and do amazing things!

When Carter was about a year old, I decided to return to college to complete a degree that had sat dormant for almost twenty years. It was something to do with all of my nervous energy. My baby was instrumental in me finding my calling. I work in clinical research in the areas of genetics and pediatric cardiology. The studies I manage involve pregnant women carrying babies with heart defects and/or genetic defects.  I have learned many things from the amazing people around me - Geneticists, Scientists, Pediatric Cardiac Surgeons and Cardiologists, Perinatologists, Pediatric Cardiac Nurses, High Risk OB Nurses and so many others. They are the experts, and are dedicated to improving the lives of these special children. It is not just critical to survive the necessary surgeries or transplant, but to live the best life possible.

Please join me in an adventure on the everyday life of the new kid in town.