I am 26 weeks into this pregnancy, but it seems so much longer than that. It is not just that pregnancy is uncomfortable, it is, but I have received the most shocking news of my life, grieved the baby we planned on, and began to accept our daughter and the way she will change our life. I want to document this pregnancy from the beginning.
I have never screened any of my previous pregnancies, but decided to have a first trimester screening with this baby. I was experiencing a couple of minor health issues and as an added bonus, I would get to know the sex of our baby earlier. At the screening, the drew my blood and measured the babies Nuchal Translucency Fluid at 2.7, which they said was on the high end and could be indicative of heart issues. When I got home, I googled it and many people said anything over 3 was considered high so I didn't really worry about that too much.
The following week, I received a message from the NFM doctor. I was immediately worried that he called me personally so called him back right away. He told me that my screening came back high with a 1 in 20 chance of having a baby with Down Syndrome. Anything over 1 in 250 is considered high so even though there was still a 95% chance that the baby was fine, it was high risk. We decided to move forward with an amnio since our risk was too high to be eliminated with an ultrasound and our NFM doctor had a very low miscarriage rate. At the amnio appointment, the ultrasound tech told us she was pretty sure we were having another girl, even though I was only 14 weeks pregnant.
After the amnio, we had to wait 3 days and it was all I could think about. 2 days later, a nurse called to tell me that they had not gotten enough cells so I would have a longer wait time while the culture grew. I relaxed after that phone call, but continued to research Down Syndrome on the internet. I read a lot of positive blogs, studies, and experiences. That night in bed, I told Dave that I knew our baby had Down Syndrome. He said he wouldn't be surprised. We went to sleep, then went to Adventureland in Des Moines on Friday. While Dave, Milan, and Cora were waiting in line for the log ride, I received a call from the NFM doctor. Our test results came back positive for Down Syndrome. I already knew it, but hearing the news was shattering. I told Dave while he was in line and he was very calm. Since we had paid good money to go to Adventureland and wanted the girls to have a fun time, I tried to put it out of my mind. I quietly cried all day, but really tried to have fun and forget about it. We stayed in a hotel that night then hung out with friends the next day. Dave and I did not get a chance to talk about it by ourselves until Saturday night. In that conversation, he confirmed that we were a team and that we could raise a baby with Down Syndrome.
After hearing that our baby had Down Syndrome, we had to wait 3 weeks for a level 2 ultrasound to see if she had any heart or intestinal issues. 50% of babies with Down Syndrome have heart defects so that was very worrisome for us. The ultrasound lasted 35 minutes, they looked at her heart over and over, and the tech would not tell us a thing. It took everything I had to not break down during that appointment. They asked if the trainee could also look at the baby, I originally said yes, then broke down and asked them to send the doctor in so we could stop waiting to hear what was wrong with our baby. The doctor came in and told us that she is completely healthy. I couldn't believe it. No heart issues or intestinal abnormalities, she has a nasal bone, and her femurs are average length; she does not have a single marker for Down Syndrome. We would have never known she had Down Syndrome if we had not done the amnio. I am very glad that we know during pregnancy and have had time to process this news before she is born.
Processing this news has been very difficult for me. I was in a very dark place for almost 2 months and I still have sad times thinking about the challenges our family will face. Dave has been okay with this diagnosis from the very beginning and is excited about her happiness and the positive affect she will have on our girls. He has been my rock through this entire experience and I am so grateful for him.
We "came out" on Facebook with the following pictures and the statement: In December, we will be welcoming a little lady with Down Syndrome. We are excited to raise our daughter, help her succeed, and shower her with love. While she will have unique challenges, we know she'll be amazing like her sisters.
The response and support we have received has been phenomenal. I still have sad moments, but am taking it one day at a time and trying to enjoy this adventure.
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