Our Down Syndrome Journey

This post was written in 2021 when Rocco was just starting Pre-K, now in 2022 he has just started Kindergarten and is thriving.


Down Syndrome occurs when a person is born with an extra copy of the 21st chromosome. The extra DNA causes a few differences;

  • Beautiful almond-shaped eyes

  • Absent nasal bone... and the CUTEST button nose you ever did see.

  • Shorter arms and legs... can you say extra baby rolls?

  • Developmental delays... they grow at their own rate.

Here's our story...


In November of 2016, we found out we were expecting our first child! It was such a wonderful surprise! There are so many women who struggle with getting pregnant (I was one of them) and to finally see the "positive" on the pregnancy test was the best gift!


I spent the first trimester worrying about miscarriage and couldn't WAIT for the second trimester. However, I didn't know the events that were about to unfold and the storm we were about to weather.


I was 14 weeks pregnant when an ultrasound found some issues with the baby's Nuchal Translucency (NT). Our baby had an NT of 8mm when it should be <2mm. This high NT scan raised concern for a chromosonal disorder or a heart defect. We took a NIPT (Non-Invasive Prenatal Testing) which came back as high-risk for Down Syndrome.

This was the ultrasound when it all began. If you look closely you can see all the fluid behind his neck and back

The NIPT is really just a screening and should never be considered 100% factual. It just shows a risk factor for certain conditions. Based on the results, though, our doctor thought it would be necessary to bring up termination. That did not go over well. Even typing this out I get sick to my stomach. What was so awful about Down Syndrome? Why was he bringing up termination already?


We went ahead and confirmed the Down Syndrome diagnosis with an amniocentesis. This was to know how to prepare for our baby. At 18 weeks gestation, it was confirmed... our son would be born with Down Syndrome.


The remaining weeks of my pregnancy were all a blur. Rocco and I were committed to our son and were willing to do whatever we needed to bring him into this world. There were a lot of doctor appointments. I mean, A LOT of appointments. We knew going into his birth that he had Duodenal Atresia (a malformation of the stomach and intestines) that would require immediate surgery after birth. We knew he had two holes in his heart that needed to be monitored. And, we knew we were looking at a long stay in the NICU.


But through it all we made it. We spent exactly four weeks in the NICU and finally were able to bring our boy home! And, oh how wonderful that was!



The first two years of Rocco's life were a little chaotic as we adjusted to his needs and medical issues. He had a second stomach surgery, ear tubes, eye surgery, and a procedure to repair his airway. He is such a resilient boy! All these things were much harder on mom and dad, for sure.




He is growing at his own rate and marches to the beat of his own drum. It took me some time to grasp the fact that he is different than most people. Once I fully understood this in my heart and mind it has become so much easier to help him along his developmental journey. He is currently four years old, goes to school full-time, and is one active little boy.




He may not be fully talking and may stumble when he tries to run but he has a lot of time to perfect these things. There really is no time limit on his achievements. He's not a typical child... and honestly, I like that.


Be sure to follow me on Instagram to see more about our life with Rocco.






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