Today is World Down Syndrome Day. 3.21. Three copies of the 21st Chromosome.
Its crazy to think that last year I was celebrating this day with a baby in my tummy and now this year she's five days away from turning 1 and we have all these beautiful babies in our life. Recently I have been getting a lot of questions about when I found out she would have down syndrome. So if you are new to our story this post is for you (Scroll down) , and if you are an active solider for Adaline's Army, then you know this story so you can just fill your day with joy by looking at these precious babies.
Our Down Syndrome Diagnosis Journey
Since Brian was going to be gone for the second half of my pregnancy and we would have little to no communication we decided to find out the gender early by a blood screening. This test was presented to me as just a way to determine the sex. I was unaware it was a genetic testing. So we took the test at about 10 weeks pregnant and you receive the results at 13 weeks. We had a gender reveal party planned and in place. We would cut this adorable cake and find out the gender while surrounded by our immediate family. Three days before the gender reveal party we received a phone call that our results were in and we could come pick up our sealed envelope! But before my doctor got any further with the phone call he told me that the test also came back that I had a 98%+ chance that the baby would have T21. But he assured me that because my placenta was "compromised" and I had been bleeding for a few weeks that the test could be a false positive because they take my blood and not the amnio fluid, and encouraged me to do an amnio if I wanted accurate results. But told me to be prepared for the test to also be accurate. Now... you don't give a pregnant woman all this information and expect her to stay calm. ( Especially a high risk pregnancy. * Back Story* I bled for 3 months, was having contractions at 14 weeks and my cervix was dilated, and I had placenta privea. The doctors "assured me" that my body was probably trying to reject the pregnancy and I needed to just wait and see.) So naturally I freaked out and told my self I wasn't cut out to be a special needs parents. I even convinced my self that the test was wrong, and I was "too young" to have a Down Syndrome baby. So we carried on with the reveal and the rest of my pregnancy like nothing ever happened. Later on in my pregnancy I went in for my NT ultrasound and my doctor told me "I was in the clear. Everything was perfectly 'normal' ". At around 20 weeks ( days after Brian left) I went in for the big ultrasound. They check pretty much everything. Adaline's heart showed a "hole" and her left ventricle was underdeveloped....significantly. Enough that i could notice a difference on the ultrasound and half the time I couldn't tell what we were looking at. So after meeting with my doctor and going over the ultrasound he referred me to USC Hospital in Pasadena for a more extensive ultrasound. I believe it was only a week between appointments but it felt like eternity. When we (my mom and I) arrived we were first directed to meet with a genetic counselor. Pretty much someone just stares at you and watched to see how you respond or react to them telling you that your baby probably has down syndrome. (Im sure thats not all they do, but it sure felt like it) I remember feeling so annoyed. She waited for me to say I wanted to terminate if that was the case, and that never came out of my mouth. I remember saying "i just have this feeling she's going to be fine. Im not worried". I actually cried because I was so frustrated with all these medical professinals always trying to convince me to be scared during my pregnancy instead of the happiness everyone else get to experience. She pushed an amnio after I refused the CVS and I also denied the amnio. We went over a family tree and discussed how no one has Down Syndrome in any of our families. Then I met with the doctor who did the ultrasound. He showed me the "hole" was bigger and the heart was not developed. Because I didn't want the amnio and the first test that we did was just a "screening" there wasn't an indefinite answer. I was told that if my baby had DS and her heart was this underdeveloped that she would probably need open heart surgery or a heart transplant at birth IF the stress of labor and delivery wasn't too much for her. BUT if my baby didn't have DS then her heart could develop in utero. So being the hormonal pregnant woman with all these people making me feel scared, I gave in to the amnio. I was still bleeding at the time and was more terrified to loose the pregnancy, because of a decision I made, than I was to have a Down Syndrome baby. I cried the whole amnio while my mom held my hand and prayed. It was such a terrible pain to experience. The cramping was magnified due to my body shakes from crying, and knowing that I was allowing this dangerous object to be injected into the safest place my child would ever have all for my own piece of mind? How selfish. Apparently amnios don't take that long, but this felt like eternity. After he was finished he encouraged me that he could rush the results so that I could terminate in time (before the cut off date). I was probably 22 weeks pregnant. I told him that wasn't an option no matter what and then we left and awaited the amnio results which took about 3 weeks. on December 16th Down Syndrome was confirmed. And it was that day that this journey started.
Today we celebrate that extra chromosome. That little something extra that brought us here. Without that chromosome I would not have known about that inner strength I had to ignore fear doctors constantly tried to fill me with. Without that extra chromosome we would not have THIS Adaline. This stubborn, strong, confident, determined, loving, sweet, angelic, and WORTHY Adaline Grace. Grace means getting something you don't deserve. And let me tell you, I don't deserve this precious soul. Without that little something extra our life would be less full. That chromosome brings joy, love, ambition, determination, strength and change. Change to be the voice for the unborn, to fight for those who can't fight for them selves. To bring value and worth to these tiny little people that will grow up to be dancers, teachers, warriors, actors, singers, writers, husbands, wives, aunts, uncles, brothers, sisters, business owners, public speakers, World Changers.
Today we celebrate you my love.