When I was 19 weeks pregnant my husband and I found out that our baby had a heart defect. This was also the day that we found out that our baby was a boy. Such amazing and wonderful news followed by the scariest news a parent can hear. The type of defect that the doctor saw is commonly found in babies with Down syndrome, so my husband and I decided to have an amniocentesis to find out. Regardless of the results we were going to keep our son; nothing in the world could have changed our minds. However, being the planners that we are, we decided that we would like to know so that we could align ourselves with the right connections before our child was born to ensure that he got the most possible support. It was confirmed a week later that our son, Noah, had Down syndrome. 

So, we started our journey before he was even born; we made calls and got connected. We grieved the loss of the baby we thought we would have and when Noah was born, we were able to enjoy him the way that he deserved to be enjoyed. Both the MDSC and the DSRG reached out to us while I was pregnant and I still remember getting a care package from the first call coordinator, Teresa Ramsby, and thinking, “Woah! There’s another kid with Down syndrome right in our town, that’s so cool!”

Noah arrived five weeks early but we were ready! We had done so much research and planning and we were prepared for the long road ahead of us. Noah was in the NICU for five weeks; the DSRG president reached out to support us and visited us at the hospital. Noah had his open heart surgery when he was four months old in Boston; he went through a rough recovery but eventually came home three weeks later. Looking back on that time I realize that it is the most painful and life-changing thing I have ever gone through. Through all of this, Noah’s medical complications, surgeries, procedures, tests, appointments; we have been supported by the DSRG. I have made some really great friends and Noah definitely has some buddies for life. 

He is six now, in an integrated Kindergarten class and thriving. He still faces many medical challenges but is getting stronger and healthier each year. He is a big brother (and acts like one!) to 2 year-old Nathan and they are exactly how you would picture brothers to be; love each other one minute and beating each other up the next. Noah has made huge strides in his six years of life and has affected so many people around him. He is a true inspiration and we are so blessed to call him our son. I look forward to his achievements and failures because all children have plenty of both. Down syndrome does not define our son – Noah is not Down syndrome; he is Noah, and Down syndrome is only a tiny part of who he is.

Danielle Scibelli