When It Rains, It Pours

Oct 27, 2016 | D&E, Stories, Trisomy 13 (Patau syndrome)

By M.A.

February 8, 2016, started as a beautiful North Carolina winter day, warm and sunny.

I felt a little groggy with a “food hangover” from the Super Bowl the previous night. We were up late and ate all the food we shouldn’t have. As I drove my kids to school, a distracted driver ran a red light and plowed into our SUV. Fortunately, our Honda is built like a tank and we walked away from the wreck only shocked, frustrated and dealing with some neck pain.

I left a message with my OB/GYN to ask if I should come in for an ultrasound to make sure the baby was OK. When they called back, I figured they were just returning my phone call. No, not exactly. They called to tell that the screening test indicated my baby, a boy, had T-13.

I only got that test to find out the gender earlier. I never imagined thought I would be in this situation.

“What do you mean?” I asked. “What is T-13?”

She explained that Trisomy 13 is a chromosomal abnormality that is often incompatible with life.

I fell apart. I can’t remember how I broke the news to my husband and mom. I was frantic. I didn’t know what to do. My mom called my OB/GYN to help us sort out our next steps.

Two days later we met with a genetic counselor. She explained that while screening tests are not diagnostic tests and can be wrong, they rarely saw false positives for Trisomy 13.

I thought of course mine would be positive, but I hoped for a miracle. Don’t we all? I am never that lucky. If I can have a major car accident and find out my baby has Trisomy 13 in the same day, I am not one who is likely to get good news.

I have been troubled with bad luck for over a year now, and the NT ultrasound and CVS followed my bad luck protocol. The baby had 8mm fluid behind his neck, typical of T-13 cases. The ultrasound tech didn’t have to tell us.

I just sat there, closed my eyes, and cried. It was one of the worst moments to see my baby’s adorable feet, his precious body, and know the only answer was termination. I would not put him through months of pregnancy and labor, only for him to die. People can judge me for that, but I am not that strong and I felt it was best for him was to go to heaven.

Actually calling abortion clinics was scary. My best advice is, avoid going to a typical abortion clinic if you have another option available. They are not always geared to be sympathetic to patients in this situation. Our genetic counselor didn’t caution us about this. Eventually, we found the right place for us.

The days leading up to the termination were the hardest. Being pregnant, feeling pregnant, and knowing I was about to end it was horrible. I cried. I sobbed. I was in pain. It was by far the worst experience. I am not downplaying miscarriages (it’s traumatizing to find out your baby has passed), but having to make that decision and await his impending death was awful. I loved him, and knew I was making the right decision for him—but it didn’t make it any easier.

The termination was painful, but afterward is was less difficult than I’d expected. There is a certain degree of closure and I feel slightly better than I did during the waiting period, but now I find myself just wanting another baby. I want to fill the void. I want something to make me feel whole. And it hurts. I know my body and my mind need time, but it just hurts so much to feel that emptiness where he used to be. I want to have hope. But three days out from the procedure, I am not there yet.

I am scared it will happen again, or that we will never be able to get pregnant. I find myself trying to go back to those moments when I had him. Time goes on, people go on, but there is a void where my plans and dreams used to be. I know the sun will shine again, but I am not there yet.

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