I was 18 weeks pregnant when we found out that our baby was a girl and had tested positive for Trisomy 21, also known as Down Syndrome. We were driving back home to Texas from Michigan on a Friday in October when I received a call from my OB/GYN’s nurse, asking if I could come to the office on Monday. I agreed, and hung up. Chris asked if I wanted him to be at that appointment with me, and thinking it was just a routine visit I said no.
Monday arrived, and I showed up to my appointment with Dr. Smith. Somberly, he asked where Chris was and I said he was working. He asked me to get Chris on the phone, and that was my first clue that something wasn’t right. I called Chris, put him on speakerphone, and together we learned that the test results showed that our daughter (we also found out at that same time we were having a girl) had Down syndrome.
I cried silently as Dr. Smith explained that our daughter was still our baby, and that we would love her no matter what. He then said that he was scheduling me for an ultrasound with a specialist in Fort Worth, as 50% of babies with Trisomy 21 also had some sort of heart defect…and four weeks later we learned that our precious daughter had two serious heart conditions known as Tetralogy of Fallot and Atrioventricular Canal Defect Complete.
It’s hard to describe the heartbreak and uncertainty we felt. We were overwhelmed by her diagnoses and had a hard time coming to terms with everything we had learned. Our biggest mistake at that time, looking back, was scouring the internet for information on Down Syndrome, ToF, and AV Canal Defect. We read worst-case scenarios, we read sad stories of abortion and families choosing to put their babies with DS up for adoption. After a while I asked Chris to stop telling me of the horrors he read on the internet. My mother’s heart couldn’t take it. This was our BABY we were learning about, and I only wanted to concentrate on all of the positive possibilities.
This blog is my way of sharing our journey with others. I hope someone, somewhere, will find comfort in my words and our experiences. Maybe I can help another family, experiencing a similar diagnosis, navigate the rough patches and get to the joy.