October is Down Syndrome awareness month, so what better time than now to tell you about my experience. I was 12 weeks pregnant then and totally clueless. I was so excited to be pregnant. A few months back I had a pregnancy end very abruptly and at that point I was just happy to be this far along. We had heard Emma’s heartbeat at 6 weeks and it was loud and strong! I could say that that day if forever stored under the “best days of my life” mental file. I trusted and loved my OB so when she told me that I had to go to a different office for a routine first trimester screening, I happily obliged. All I knew was that they would be checking for chromosomal abnormalities. I wasn’t nervous or worried. I didn’t even take my husband with me. I just got up one day and went to the office, excited that I would get to see the baby in the ultrasound.
The lovely ladies called me in and I practically skipped all the way to the ultrasound room. My tech was very sweet. She began the ultrasound and assured me that the babies heart was good and her stomach and intestines were all in its place and all that was left to do was to measure the nucal fold behind Emma’s head, right where her spine was. For those that don’t know, children with chromosomal abnormalities usually have higher levels of this fold. During the screening, they measure that and combine it with blood tests previously taken by your doctor. After they have all the information they need, they put it into a system that generates a probability for T21 (Down Syndrome) T18 (Edward’s Syndrome) and T13 (Patau Syndrome). Once my tech was done, she assured me that her nucal fold level was very low and that that was great news. At that point we were done and I took my sonogram pictures and went back into the waiting room.
A few minutes later, the tech, along with the receptionist came to call me in. I knew something was wrong at that point. They had very sad faces! They sat me down and said that “I tested positive for T21, Down syndrome”. I was shocked to say the least! The tech then explained that I had a 1/49 chance of having a baby with Downs. Her exact words were, “So basically 50/50”. Now, for someone who’s in utter shock, my math was not on point! 1/49 is not 50/50, but of course that’s all I could focus on. After that, they became very business like and began to quote a ton of dollar amounts that I needed to pay in order to meet with a genetic counselor. I sat there staring into space. Like the whole world had stopped for a few minutes. I then decided to leave. I politely said no thank you and that I would like to consult with my doctor before seeing anyone else.
I stormed out and called my sister and husband and of course my doctor. I cried in my car for a while and all I kept thinking was 50/50! It took my doc a whole day to call back and we talked about my options and we decided against an amniocentesis (where they insert a huge needle into your belly to retrieve amniotic fluid for testing). This would have been the most accurate 100% form of testing, but posed a small, 1% chance of miscarriage. This life within me was so incredibly precious I couldn’t live with myself if I lost her. Another option we were given was to do a simple blood test that would be able to tell us if there were any chromosomal issues and also tell us the sex of our baby. We chose this option since it posed no threat to Emma. It’s a fairly new type of test and only has a 98% accuracy rate. It was good enough for me! We went in on a Friday, had my blood drawn and had to wait 1-2 weeks for results. By that time, 3 days had passed since my initial visit for the screening. Each day that passed, while we waited for the results, was like a million years crammed into one day. I was afraid. I was afraid for her future, for my future. For how she would have to live in a world that isn’t very accepting of people with special needs. How she would possibly have to deal with a slew of health issues and if I was strong enough to be a mom of a child who needed lifelong care. I was extremely ignorant of people with Down’s syndrome and that made it worse because I only thought the worst. I now know differently. I see Insta friends with beautiful babies who happen to have Downs and all I get from them is that these children have brought more joy and love then anything else. It’s true that they are more alike then different. I wish I knew these things back then.
After a week, I got a text message from my doctor telling me that all was ok and Emma had a typical chromosomal count. We held off on knowing the gender so that we could have a reveal party. I was so happy I cried! I called my family in tears and told them that everything was going to be ok. The thing is that it was going to be ok anyway. I now know that having a child with Down syndrome isn’t a deathly diagnosis. It’s a tough one for sure but there are far worse things that can happen to you as a person. In some ways it’s a blessing and a calling from God.
I carry a bit of guilt with me now. I think of how blessed I am to be Emma’s mom and sometimes I remember how ignorant I was with what I thought I knew. We live and we learn though. I’m hoping that by sharing my story, I can help another Momma who’s in the same shoes as I was back when I revived such news. These are the things we sign up for as mothers. From the moment we conceive, we are faced with choices and options and worries and joys. It’s a roller coaster for sure but there isn’t a day that goes by where I don’t thank God for blessing me with motherhood.
If you’d like to donate to the National Down Syndrome Society, you can do so here: http://www.ndss.org/Ways-to-Give/Ways-to-Donate/
THIS BEAUTIFUL DRAWING DEPICTING A MOTHER WITH HER CHILD WAS DRAWN BY @MOMISDRAWING