Dezo - born 2006My older brother Danny was born with a single left ventricle 29 years ago and wasn't expected to live past adolescence, but my mother met one doctor who told her to have faith and hold on a little longer and by the time Danny was 10 they would have something for him. Sure enough, at age 10 he underwent open-heart surgery. Today he is doing great - he's an electrical engineer and the smartest person I know!
CHDs run in my family so when I found out I was pregnant 2 months after marrying the man of my dreams, I asked the technician to focus on the baby's heart during my 1st ultrasound - just in case. I didn't really think that the baby would have a CHD - I thought if anything it would skip a generation, but certainly not affect two generations in a row! The doctor said he couldn't get a good enough look and sent us to UCONN in Farmington. After measuring everything, the technician turned to look at me and paused. I thought she was going to say that all was well but instead she told me that one side of my baby's heart was smaller than the other. My world collapsed. I remember repeating Hypoplastic Left Heart Syndrome over and over in my head so that I wouldn't forget it.
The next few days were horrible but I found hope in my brother's cardiologist and through support organizations like Little Hearts, Inc. Years ago, when my brother was in the hospital, the success rate for the surgeries for HLHS was much lower, but researching the Norwood procedure and seeing so many healthy HLHS KIDS - not just babies - on these websites, helped immensely!
On July 6th, Dezo was born in Boston and whisked away across the breezeway to Boston Children's where he would start his fight for life. His middle name became Daniel in the hopes that if he had Danny's name, maybe he would have some of Danny's luck in overcoming his CHD. Dezo was in the hospital for 5 1/2 weeks after he was born and he has already had the Glenn. Now we are looking forward to a long break from surgery (a whole year at least!).
Dezo is happier, stronger, and more full of life than I ever could have imagined. We have truly been lucky with him so far! He is a chubby 17lbs and has stayed healthy so far. It is very easy for me to forget that he has such a severe heart defect, but then I'll look at old pictures or read something online and it all comes flooding back. Yes I am afraid for what the future holds for Dezo, but I keep thinking back to what that doctor told my mom so many years ago, and I am holding onto the faith that if there comes a time down the road when Dezo starts to fall, research, technology, and brilliant surgeons, doctors and nurses will be there to catch him.
Story by Dezo's mom, Taryn - Connecticut
Dylan - born 2004
David - born 2006