2024 Pittsburgh Buddy Walk Fundraiser

It's the middle of the summer in 2022. We are due any day with our first child! It was an exciting time for us as we look forward to starting our family. We had the nursery ready to go, green with monkeys to be gender neutral as we decided to keep the gender a surprise.

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The day finally came and we got to the hospital, ready with anticipation on meeting our little baby. For the most part, everything leading up to this day has gone as expected. While in labor, the baby wasn't reacting to the contractions as the doctor would like to see, explaining to us that we may have to delivery by C-section. This wasn't ideal, but the getting the baby out was the only thing that mattered. The decision was made to go forward with an urgent C-section.

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We got to the operating room and within a few minutes, the baby is out and it was announced, "It's a girl!" We looked at each other with pure joy. They got her cleaned up and brought her over for us to say hello to our beautiful baby girl, Mya. She was then taken down to the NICU which we had already expected. During some prenatal scans, there were some heart abnormalities that seemed to resolve itself through the pregnancy. So the trip to the NICU was to make sure everything still looked good.

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It took some time for us to get to go see Mya, but when we finally did, she was in an incubator because her oxygen levels were a little low, but everything else was great. As time went on, she was passing all of her tests and doing well, but the doctor kept saying things like, "I don't like this," referring to the way she was lying in the bed. He gave no follow-up explanation and we were so confused. We would ask the nurses but they weren't able to give any other answers.

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If you have never experienced the NICU, each morning the nurses do "rounds" during their shift change where the previous shift will give updates to the incoming shift. They discuss each patient one by one and invite family members to listen in if they would like to, as well as ask any questions they may have.

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It was day 3 since Mya was born and during the rounds, the head nurse said something about testing Mya for Down Syndrome. This is the first we had even heard of this being a possibility. We were visibly shocked and the nurse later apologized as she thought someone had informed us of this possibility. A couple days later, test confirmed that Mya did have Trisomy 21, aka Down Syndrome. This news came as a shock and as you can imagine, emotions were running very high, especially with the lack of sleep.

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Our story of how we found out is one of many similar stories from other families in the Down Syndrome community. Some know during prenatal tests and others find out after birth like us. In all cases, one thing has been consistent; the wonderful people at the Down Syndrome Association of Pittsburgh (DSAP) were right there ready to help you! From providing information and helpful resources, to introducing us to other families and people that are available to answer questions. We were welcomed with open arms into a community we never knew existed.

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Mya turned 2 years old this summer and we wish we could go back in time to that NICU and tell ourselves that everything is going to be just fine, that Mya is going to be surprising you every day with what she can do. Yes, she is going to have to endure different challenges than other kids, but this little girl is resilient and ready to take these challenges on. We are so proud of Mya and wouldn't change anything about her!