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When My Son Was Given a Prenatal Diagnosis of Down Syndrome

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I was terrified. My OB called. I was on a conference call for work and I missed it, picking up her voicemail after. It gave me the chills. The OB never called, only the nurse. We had gone through so much to get pregnant — IVF had finally worked. What could this mean? My mind raced.

I called back immediately and got the nurse. Always so friendly, this time she had a tone that made my heart sink. She told me the doctor was with another patient but would call me back. “But Nursey,” I objected, “you tell me everything. Why do I have to talk to Doc So-and-so? She sounded weary. She said Doc So-and-so would call me “just as soon as she could.”

I tried to breathe. Everything inside me was screaming but I wanted to be still because that tiny baby, our tiny baby, needed calm. Doc So-and-so finally called, a million years later (it was only an hour). “Doc, what’s going on? Is something wrong with the baby?” I shouted this, without even saying hello. She sighed, “Yes.” I swear, my heart stopped. “What is it?” I asked, grasping my belly, the baby. The pause was unbearable, “We got your blood work back. Your baby has a high probability of having Down syndrome.” On and on she went, about percentages (ours was 99 percent), about what the diagnosis meant, our baby might never walk or speak. Might not be potty trained until 7. Would never drive. The spectrum was wide, she said, our baby might be high functioning or low, but would have a severe intellectual disability and would likely have many medical problems: heart defects, deafness, GI issues… the list went on. She told me to talk to my husband, that she had already made arrangements for us to have a level 2 ultrasound with a Maternal Fetal Medicine doctor and meet with a genetic counselor the next day, who would further confirm the diagnosis.

“But the baby’s OK?” I asked again. “Yes,” she said, “do you want to know the gender?” I did. “It’s a boy.” With those words we hung up. I was breathless, panicked, devastated, scared out of my mind. I called my husband at work, told him what the doctor said: that we were having a boy and that he had a 99 percent chance of having Down syndrome. He came home immediately. We loved this boy already, we told each other. We could do this, we said. It would be hard, we said. It would be scary at times. But he was our son, and we would fight for him. I’d never loved my husband more than I did right then.

That night was sleepless, we spent it in a black hole of Google and (my) tears. The next morning, we went to the new doctor. We were brought to a room that had no windows, a couch, a coffee table with a box of tissues and a single chair. “This is a crying room,” I told my husband. The genetic counselor came in. She was very nice and told us all the same scary things the OB had, but she also said that our son would be OK. He would likely do all the same things other kids would, but in his own time. He would be developmentally delayed, but he was still a baby, our baby, she said. I used all the tissues in that room. We told her we knew that, and that no mater what happened next, we loved this boy with everything inside of us and that we were all in, for all of it. We were brought to the next room for our ultrasound. The technician was sweet and soothing and the doctor came in and confirmed our son had some soft markers that, as best as they could, confirmed the diagnosis.

There were so many words and reassurances, but I don’t think we heard them, because this was our first time seeing our baby boy. We were mesmerized. We were in love. There he was! His tiny face, his little hand, waving at us.

The drive back to our house was epic. I was full of love but so very, very afraid. What would school be like for him? Would kids be kind? Would the world embrace him the way we would? What would he be when he grew up? How could I help him be happy, achieve, be loved? Where would he fall on the spectrum? Would he ever say mommy? I was a million miles away from where I needed to be. I told him I loved him, over and over, and I know he heard me.

That night, we decided he needed a strong name, a name that would carry him through life and give him courage and confidence. Wyatt Steel. We knew at that moment that he was a warrior, that we would be warriors for him and that we would build him an army. As I think about this day, a year ago now, I wish I could go back and tell myself not to be so afraid. That I could do it, that I was doing it, and most of all, I would tell myself that Wyatt would be OK. He would be perfect.

To all the mamas out there grappling with a prenatal diagnosis, I can tell you this: your baby will be so resilient, will bring you more joy than you’ve ever known, will show you kindness in your friends and family that you knew was always was there (but will fill your soul all the same); and will introduce you to a whole new tribe of other mamas and families just like you and yours.

Selfie of mom smiling at camera with 6.5 month old baby with Down syndrome on her lap smiling at the camera, too.

And since I say it every day, all day to him, I will say it here too: I love you, Wyatt Steel. You are our whole world.

Originally published: October 5, 2018
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