Our Kids - Dylan

My husband and I learned our son had a heart defect called Hypoplastic Left Heart Syndrome (HLHS) via ultrasound when I was about six months pregnant. It was devastating news and we were given the options of the 3-staged surgery, transplant, or compassionate care. We chose the first option as we decided to give our boy every chance at life.

On December 27, 2004 Dylan was born. We were each able to hold him for a few seconds before he was brought over to Boston Children's Hospital. He looked like any normal baby, not sick at all. Although he had a few IVs and monitors hooked up to him, we were able to hold him as much as we wanted prior to surgery. He had the Norwood (Sano type) on New Year's Eve. He did have a circulation problem during surgery but other than that, he made it through with flying colors. We were told some kids have to stay a month, maybe more, but were able to take our son home with us 12 days after surgery! Just under four months of age, Dylan had the second staged surgery as his oxygen saturation levels were decreasing. Again, he amazed us and we were home in four days!

Developmentally, Dylan is a thriving little boy and is on track for his age. He does have low muscle tone, but is able to compensate. He climbs all over his play set and enjoys climbing UP the slide. He does give us a difficult time with eating each and every day but with much effort he has gained weight and has never had to have any feeding tubes. He is small for his age but he's on the charts and continues to grow. We make sure to treat him like a "normal" child. We go to parks, swimming at the beach and pool, and visit with family and friends often. It has been a difficult and rewarding journey so far and although he still has the Fontan surgery to go, he is our strong little fighter - our little Christmas miracle!