We were terrified when we first learned that our son, Dex, had Down Syndrome. We were at 16 weeks (although his NIPT returned at 97%, so we knew much earlier) and scared about all the health challenges (mental and physical) he may face and if we could provide him the best possible life.

We spoke to a genetic counselor who talked us through the potential intellectual challenges. But we had also read about possible heart and gastrointestinal issues and even stillbirth. The pediatric cardiologist found a tiny hole in his heart, but no one was concerned. They reassured us that it was an issue found in many babies, not just those with Trisomy 21, and it could be easily fixed if it didn’t close on its own. Throughout the pregnancy, Dex grew on target and was an active little baby boy. My constant reassurance was that he constantly moved, keeping his mommy awake at night, but at least I knew he was ok.

At 33 weeks, I noticed his movement had slowed. I called the doctor Monday morning and went in for an NST. His heartbeat was normal, but no amount of juice or food would get him moving. The doctors assumed he was tired after a busy weekend, and I was sent home with instructions to get two more ultrasounds that week. He passed those with flying colors, moving, practicing breathing and doing all the things we needed him to do. My partner was with me for the Friday ultrasound, and our little guy kept hiding his face. That would be the last time we saw him alive. Three days later, I went in for my weekly appointment. The medical student couldn’t find his heartbeat. He asked me when the last time was that I felt him move. I honestly couldn’t remember. We had such a busy Saturday and Sunday, and I had felt him move, so I figured he was tired again. My doctor came in; she also couldn’t find a heartbeat with doppler either, so she took me for an ultrasound and then I heard the words I never expected. “Kara, I’m sorry.” The following hours are a blur. I called my partner and parents, who met me at the hospital. My incredible doctor stayed with me the whole time. We opted to deliver by c-section the next day.

Dex James was born still at 9:58 a.m. on October 19, 2021. He was 4 lbs. 1 oz and 17 inches. He was perfect but silent. He looked just like his big sister and was named after his two grandpas, Dennis and Rex. We chose to bring our 4-year-old daughter up to meet her brother. She did not understand what was happening, but we felt it was important for her to know that her brother was real and would always be her brother. My parents and my sister were able to see him too. We spent the next 24 hours with Dex in our room. Going home was torture, knowing we couldn’t bring our little baby home. We don’t know why Dex died, and we never will. It’s been eight months, and I still ache for him every day. We planted a maple tree in our front yard that will be bright red around his birthday. I miss my son, and I know he watches over us, and we will see each other again. But I would rather have him in my arms.