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My Story: My Baby Has Down Syndrome

By Sophie Hull & Julie B. Cevallos

My Story: My Baby Has Down Syndrome

We found out the day after she was born. The pediatrician was asking us some questions and I still didn’t understand. When I realized she had Down syndrome I was completely shocked. We are very lucky in that she had no health issues, as almost half of babies with Down syndrome are born with heart defects. She was in the NICU to monitor her temperature for a few days, but nothing too serious.
Coming home, it was really scary at first, but I got quickly connected to a local mom that hosted a big playdate with kids with Down syndrome and I saw that these kids and parents are happy.
Nina is a ball of energy. She is so cute and so excited about life especially now she has just turned 4 and can talk more. She loves to be around her brother, who is always running around, so she is a really active kid. It’s great to see her enjoying everything and learning to express herself.

Mom Advocate

She attends a preschool with typical kids mixed in with special needs kids. The trickiest thing is making sure that she has therapy or support at the right time. I’m not a doctor or a teacher so I’ve had to learn a lot, advocating for her, making sure everyone is supporting her at school. It’s hard work, but I’ve done a lot of homework, learning new things and asking other parents.
With Down syndrome, every kid is different. As a parent you don’t know what to expect and how far to push. Nina is about 6-12 months behind. She’s making progress, it’s just hard to know what each year will look like.

Living in the Moment

She has given us a lot though; she has brought us together more as a family.
I used to be ahead of things, now I live in the moment, I think ‘things are good right now’ and try not to worry too much about the future. I enjoy her, versus thinking ‘has she hit this milestone?’ She’ll do it when she does it and we just have to support her to make progress.
I was meant to be her mom, and she was meant to be my daughter. I feel like she has made me a better person and has given me an extra way that I can be a mom; advocate for her, help her. We have a very close bond.”


What is Down Syndrome?

Down syndrome is a genetic condition that occurs when an individual has a full or partial extra copy of chromosome 21.
There are 3 types of Down syndrome, and common symptoms include developmental delays, low muscle tone, small stature and an upward slant to the eyes.
People with Down syndrome also have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions.
For more information, visit ndss.org

Julie B. Cevallos is the vice president of marketing for the National Down Syndrome Society. She lives in Connecticut with her husband, 7-year-old son Alec and 4-year-old daughter Nina.

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