Dear Mom with a Prenatal Down Syndrome Diagnosis

One mom's encouragement for other mothers

I cannot tell you what challenges your precious one might have — just as I cannot tell you what challenges anybody’s child will have, “special needs” or not. One aspect of your child’s life just happens to be detectable by prenatal medical technology. But prenatal testing cannot tell you who your child will be, anymore than a fuzzy, black and white sonogram can tell you how your child will look.

 

Dear mom who just received a prenatal Down syndrome diagnosis,

I know how you feel.

Except — unlike you, I was holding my new baby, Kate, in my arms when I found out. She was wrapped in a blanket, looking up at me as I cried, listening to the Neonatologist on staff tell me — only minutes after she was born — that she had Down syndrome. And what that meant.

He said that it meant she had an extra chromosome. And that she would have learning delays. He said that it meant she was significantly predisposed to certain medical conditions, including congenital heart defects — and that we should get her heart tested right away. He said that it meant she had low muscle tone and may not be able to breastfeed. He said that it meant she would do things on a different schedule than other kids.

And in those first few days, after hearing those statistics, talking to doctors and researching online, I thought I knew what it “meant” to have a child with Down syndrome. And quite frankly, I was devastated.

And so it is with you.

But let me tell you — from one mother to another — those facts are not what it means to have a child with Down syndrome.

Many of those facts may not even apply to you. Some might, but many might not. I’ve learned this with all of my children. And I never allow generalizations to set my expectations. (For the record, Kate breastfed like a champ and continues to break stereotypes.)

What those facts didn’t tell me about Kate is that — along with almond eyes and slightly lower muscle tone — she would also have my thick, blond hair and full lips. That she’s a Daddy’s girl. That she loves peanut butter waffles and rocking her baby doll to sleep. They didn’t tell me that she’s a nurturing big sister, a doting little sister — and the star in the room wherever we go.

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