Expecting Caroline... Caroline is my first born, and when I found out I was pregnant I was so surprised. We had tried to have a family for 3 years with no luck. My husband and I were so excited.
All of her non-invasive testing that is normally done throughout a pregnancy came back normal, until the Level II ultrasound. At 22 weeks into my pregnancy, the doctors found a heart defect: AVSD (atrioventricular septal defect). With this discovery also came the risk of Down syndrome at 30% odds. We had to know, and did the amnio in the office that day. We were phoned with the results the next day and confirmed our worst fear, or so we thought at the time. That was a Friday, we were devastated. We had some serious soul searching to do over the weekend. We had a cardiology appointment that following Monday to find out more about the heart defect. We read everything we could get our hands on about DS as well as the AVSD in order to make an educated decision going forward. We knew this would affect our relationship for the rest of our lives and had to play out every scenario before making our decision. The fact that we had such a hard time conceiving, my Catholic faith, and just the answer to the question of whether or not I personally could move on if we chose not to continue the pregnancy, all had a huge impact on our decision.
After meeting with our excellent cardiologist (Dr. Milazzo at Duke Childrens), I knew that I could do this. Tackle the DS and the AVSD that is. So that was our decision. We read and watched everything we could get our hands on, and talked to people about our situation. That seemed to help and prepare us more than anything. I joined TDSN within two weeks of our diagnosis, and attended a Mom's night out, as well as the 2004 Buddy Walk during my pregnancy. It was all scary, but what I needed to do to be prepared. I didn't want the birth of my daughter to be anything less than a celebration of a new life. I wanted all of the uncertainty and apprehension over with prior to her arrival. And for the most part it was; but don't think I didn't hold onto that 1% of hope that our prenatal test could be wrong. The minute I laid eyes on her, I knew the doctors were right. I spent all of 1 second focused on DS. From then on it was all about my little Caroline and her health, not about DS.
In the beginning, I always wondered if people could tell when they looked at her. Now she's two and a half. I have no time to worry about what people are thinking or saying, I'm so focused on her and what she's into. Matter of fact I don't even see the DS anymore, I only see my beautiful little girl, Caroline!
Not a day goes by that I don't count my blessings as I replay those crucial days over and over in my head, and am just so glad that we made the decisions that we did. I can't imagine life without her. You always hear people say "I wouldn't change it if I could". Well that's true to an extent. I wouldn't change her at all, I love everything about her. What I would change is the perspective people have toward any person with a disability. She has taught us so much, and brought us so much joy as well as everyone around her. She is my heart and my inspiration!
Jane Ball
Caroline's Mom
