Sienna, You Make Me Better

I’m not sure there are words to adequately share just how much Sienna’s life makes us all better, but I sure will try. I will always shout her name from the rooftops and share her story in an effort to provide hope, truth, and love.

We received a prenatal diagnosis of Down syndrome when I was 10 weeks pregnant. We had some hard markers show up on our ultrasounds, which led to genetic testing via blood work. After a very long week waiting for the results, I received a voicemail from my doctor stating he would like us to come in and speak to the genetic counselor asap. Cue panic mode. The genetic counselor called me about an hour later, and her words will forever receive a front row seat in my memory because they were heavy. They were harsh. I don’t think she intended it to be that way, but it’s how I felt. “The results of your blood work came back, and there is a 96% chance your baby has Trisomy 21. Do you know what Trisomy 21 is? It means Down syndrome. The doctor would like you to come in today or tomorrow so we can talk and go over all your options, including termination.”. I stated it on the phone and then again in our meeting that termination wasn’t an option, and I would like for them to stop bringing it up. 

The appointment with the genetic counselor and then with my doctor was full of all the possibilities. In a very small room with my husband, our 2-year-old daughter, 1-year-old son, and genetic counselor, a “genetic counselor in training” went over all the information and pamphlets they had for us. She stumbled through the information, and both my husband and I were physically there but mentally absent. We saw the doctor right after and went over all the same stuff. We were told there was a 50% chance that our baby would have a heart condition that could resolve itself shortly after birth, she could require open heart surgery, or it could render our baby incompatible with life. But we would have to hold tight until 22 weeks to have a fetal echocardiogram to know more. He wrapped up the appointment with, “I have the gender here of your baby. Do you guys want to know?” We planned to wait, but in that moment, we needed to put a face and a name to our baby. “Congratulations, Mom and Dad, it’s a girl.”