Our Down Syndrome diagnosis story: from a Mother
What It’s Like Having a Baby with Down Syndrome
“We declined any further testing, and we knew termination was absolutely not an option.”
I will never forget the moment I found out my baby was at high risk for Down syndrome.
I received the call when I was about 23 weeks pregnant with Zara, who is now 4 years old. At the time, I was already navigating the grief of losing my mom a few months earlier. To hear news like this while pregnant was an emotional whirlwind. I thought to myself, Really, Lord? You want to do this now?
If you’re reading this, chances are you’re searching for someone to be real with you, maybe even to offer a little hope.
Processing the News
Our down syndrome diagnosis started with a call. When I received the NIPT genetic blood test results, the nurse told me, “We were very shocked by your results.” My heart sank. She explained that my baby had a 9 out of 10 chance of having Trisomy 21 (Down syndrome). I tried to hold back tears, but they came anyway.
We were offered an amniocentesis, a more invasive test with risks, and informed about the option to terminate the pregnancy. But my decision was clear: further testing wasn’t necessary, and termination was not an option.
The Emotional Roller Coaster
I wrestled with a million questions:
How would she look?
Would she be mentally competent?
Would this destroy my marriage?
Would her big sister, Melody, feel burdened or embarrassed?
Could she live an independent life?
These were raw, human thoughts, and they’re okay to have. I cried, prayed, and asked God all the hard questions.
Life with Zara
Fast forward to today, and my sweet Zara is 4 years old. She is an absolute light in our lives. Her chubby cheeks are like soft clouds, her bright eyes captivate everyone she meets, and her hugs are like slices of heaven.
When Zara was born, I worried life would be drastically different, but the truth is, life with her isn’t so different at all. She cries, she laughs, she loves cuddles, and—yes—she keeps me up at night sometimes. In many ways, she’s just like her big sister Melody.
What’s unique is the added layer of therapies and learning opportunities. Zara has weekly speech, occupational, and physical therapy, and we’ve learned some sign language to help her communicate. While it’s a busy schedule, it’s all worth it.
Reflecting on Motherhood
If I could go back and reassure my pregnant self, I’d tell her that everything would be okay. Zara has shown me another side of life, one filled with unimaginable joy and purpose. She’s thriving, breaking barriers, and teaching me so much about love and resilience.
To other moms facing a similar journey: breathe. It’s okay to grieve, question, and process. But know this: your baby is a blessing. Surround yourself with positivity, set boundaries if needed, and take time to enjoy your journey.
We’ve chosen to raise Zara around both typical children and peers with Down syndrome. We want her to know she belongs everywhere and can be part of all facets of society.
Yes, there are challenges, but this is motherhood—with an extra sprinkle of love and an extra chromosome.
Life with Zara is pretty darn good.
With love,
Melissa
