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How My Baby With Down Syndrome Changed My Perspective of ‘Healthy’

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My husband and I chose to be surprised for all three of our kids. We already had one healthy boy and one healthy girl. I was 39 years old when I was pregnant with our third child, so when people asked us what we were having, we would say that we just wanted him/her to be healthy. 

When I was younger, I overheard another mother talking to my mom about loving a child even if it wasn’t healthy. This foreboding thought always came to mind after I gave my perfunctory response. If I could go back in time, I would give another answer entirely because Down syndrome has changed my perspective of “healthy.”

Gabriel (affectionately called “Gabe the Babe”) was born on March 16, 2016, at 12:41 p.m. Despite delivering a 9-pound, 12-ounce baby boy, it was the easiest labor and delivery I had because I had a really good anesthesiologist. After that final push, I was looking to see what we had before my husband, Josh, could announce it. Once I saw what I needed to see, I looked up at our baby boy. His tongue, mouth and eyes made me suspect Down syndrome in those first minutes of his life outside the womb. Josh didn’t kiss me, but instead he looked very frantic in those early minutes. 

It was about an hour after Gabe was born that I urged my husband to say something. He asked my labor and delivery nurse if something were any issues with him. We both saw it in her face, and her eyes began to water. She said she would go get my OB doctor. The doctor came in and looked at him but was very non-committal. She said she would call the pediatrician and have her come talk to us. Those were the longest five hours of our lives. 

Later that evening, the pediatrician came in to talk to us after rounds. She talked to us about our “Down syndrome” baby boy. She delivered the news as best as anyone could. I still remember her words: “It will be our job to help Gabe be the best Gabe he can be.” 

There was talk of doing a karyotype and genetic testing to confirm her suspicions, but she was “99 percent sure.” We would have to wait a week for those results. After she left, we cried — a lot. We had the difficult task of calling family and sharing the news with them. We cried a lot when telling them, too.

That first week was a busy blur since Gabe was jaundice. We were going back to the hospital for blood draws, making calls to the pediatrician to see if levels were coming down and making sure he was on the biliblanket as much as possible. We had family in town to help with the two older kids and to just be there for us.

On Good Friday, Gabe’s original due date, I was talking to the pediatrician about the jaundice when she told me the karyotype results were in. They confirmed our suspicions — Gabe has Down syndrome. All week I was operating like he was, but I still held out hope he wasn’t. So when I got the news, I cried some more.

You see, by medical terms, my son is not healthy. The actual karyotype used the words “abnormal male.” I actually winced (and probably cried) when I read those words. I understood the results indicated my son isn’t “healthy,” but in the weeks that followed, I learned to look at it differently.

In the hospital, the pediatrician said there are two big hurdles that babies with Down syndrome face: heart health and feeding. Gabe was born with three minor holes in his heart. Two have already closed, and the remaining one is so small it won’t require surgery even if it doesn’t close. For us, that means healthy. And within an hour of birth, our little guy latched on like a champ and nursed for about 45 minutes. Healthy, right? There have been many other answers to our prayers during his six months here on earth, and for that, we are extremely grateful for our healthy baby boy. He continues to amaze us every day!

Down syndrome has changed my perspective of “healthy.” If I could go back and change my answer to, “What are you having?” I would say, “I don’t know, but I just want to have a baby to snuggle and to love for the rest of my life.” We have that in Gabe — and an extra chromosome to boot!

Lead photo source: Thinkstock Images

Originally published: October 3, 2016
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