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.”

The long wait to 22 weeks wasn’t that bad. We had so much peace with the little life growing inside of me and knew that she was going to be exactly who God intended her to be. The fetal echo showed her heart was perfect. 37 weeks came and our scheduled C-section went according to plan! Everything was smooth sailing until they took Sienna to do her carseat study 36 hours after birth and returned empty-handed. The NICU nurse came in to talk to us and told us she had “failed miserably” and required oxygen to get her sats up and a transfer to the NICU until she stabilized. As so many parents have experienced, those moments were filled with fear, so many questions and uncertainties, and honestly, hopelessness. BUT it was in the NICU that I sat with my 15-day-old baby girl and decided to watch the livestream of the Jack’s Basket Gala. I watched with tears streaming down my face, and was given so much hope. Listening to all the ways families’ lives have been changed for the better gave me exactly what I needed in that moment. I finally finished filling out my Jack’s Basket request form that I had previously abandoned at least 5 times, and I decided it was time to saddle up. When Sienna turned 6 months old, I became a Jack’s Basket Parent Volunteer! I’ve been able to remotely connect with multiple parents, and it’s such a rewarding feeling to bring a happy, hopeful, cheerful message!


Sienna has taught me how to advocate in ways I didn’t know before. She has made me stronger, she has made our family love SO much harder! She has a way of looking deep into your soul and then stealing it with her smile. She is a miracle that I will never take for granted, and I know we are just getting started. Knowing we get to have a front row seat in her life and watching it unfold brings me the utmost joy. This is why the words of the genetic counselor also stay at the forefront of my mind. Those words couldn’t have been more inadequate and empty when delivering Sienna’s diagnosis. Her life is worthy. And more than anything, her life is wanted and cherished. And I will share that message with anyone who wants to hear it!
–Courtney, Sienna’s Mom (Nebraska)
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