Our Kids - Joseph

Joseph was born in Rhode Island December 23, 2005. I still remember waiting in my room after the nurses took him for a bath and having what seemed like an army of people arrive. I actually made a joke about something being wrong and to my horror the cardiologist informed me that I was right. He went on to say that Joseph needed to be transported to Boston Children's Hospital and something about a heart cath to stent hime and three surgeries and possible death. I don't think I heard anything after that - it just sounded like babble to me. All medical words I am now so familiar with!

Joseph was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) on his birthday and had the Norwood at 4 days old followed by a 5 1/2 week hospital stay. It felt like months at his bedside...wondering what was going to happen to our baby.

We were angry that we didn’t know before his birth. It seemed like tests were offered to me for so many things but no one ever talked to us about the most common birth defect. We were unable to prepare ourselves and his big brother, who was filled with questions about whether we were going to be able to “keep him.“

After the bumpy start, he had an uncomplicated time at home and had his second surgery (bidirectional Glenn) at 5 months old. We were home in six days and have again been blessed to have had an uncomplicated post op recovery. Of course, I worried each day about his eating - his growth - his future. He has had excellent medical care from the nurses, doctors, surgeons and specialists involved with his case.

Even now that he is 21 months old I think each day about why we didn’t know in utero. Why we weren’t able to possibly benefit from fetal intervention being done at Boston Children’s and the latest technology that could have altered our son’s path? If we didn’t live so close to Boston Children’s we would have lost Joseph that day because he had HLHS with an intact atrial septum... less common and more fatal upon birth. We should have known.

I am home with him and my husband has had to bear the sole responsibility of supporting our family. Each day is a blessing and I try to enjoy him as a mom and not a nurse. It is a challenge. Joseph is a very active toddler right now. He loves pasta, Twizzlers, and grapes. He copies his 8 year old brother Jaxon at Karate and baseball. He is on track with all developmental milestones and we realize how blessed we are that this is the case. He is handling his life like a fighter and we are trying to be just as strong.