What Parents Really Need To Know When They Receive A Prenatal Down Syndrome Diagnosis

by Alexa Byrnes for The Mighty
Originally Published: 
down syndrome
Nicole Modeen Photography

Dear parent who just received a prenatal Down syndrome diagnosis,

Take a deep breath.

I’m one of many you will meet on your journey who was once in your exact position.

Your phone rings and your obstetrician meets your “Hello?” with an “I’m sorry.”

You’ve been feeling great, and you haven’t had much reason to worry. But thinking back, the ultrasound tech wasn’t so quiet for no reason. She didn’t rush to take her photos, and at one point, she left the room for quite some time. And you were so focused on seeing that precious profile anyway, so you tried not to mind her.

He asks you to come in. “Right away, if you’re close.” You’re met at the office by a strange woman you haven’t met before. She’s a geneticist, and she’s about to ramble off more information than you can ever imagine. And through the many scenarios, you listen intently but never retain a word.

Your cheeks are tear-stained, and you’re scared. They request more blood, so you oblige. You’re praying, and in that moment, you’re so incredibly numb.

They said it would be 10 days — 10 days before “it’s highly likely” turns into “we can nearly guarantee.” In those 10 days, it feels like a lifetime has passed for you. You comb through the internet mercilessly. (Don’t do that.)

The third test they run is enough to give you an answer. But they can’t say it’s definitive. They will do that when your baby arrives. Would you like to know who you are carrying?

You’re dying to know.

So you pack up shop and head to the city where that little envelope awaits you. Your devastation is clouded with so many other emotions that you’re unsure of what to call it. And that’s okay. It’ll be like that for days. But for now, you will try to celebrate.

That night, your home is filled with the closest family and a couple friends. Your living room is filled with love and screeches. Pink confetti fills the air — a little girl. You’re so happy.

They’re the only ones who will know for the following seven weeks. You’re not ready to tell the world just yet, but you will. And you will be stormed with support.

After all, you have so much to celebrate. You just don’t know it yet. But you will soon.

In the five months that pass, you learn more than your brain ever will filter. Throw away the folders and pamphlets. Tuck away the books. Your best friends are coming, and they will become your greatest resources. They’re online all over the country. But they will be there. They will never let you down. These people will become your family. And I promise you will never experience anything alone — the victories, the frustrations, the goals, the setbacks.

You see, these people live parallel lives. That’s how you will learn.

And as soon as they hand you that beautiful girl, everything you thought you knew about this journey goes right out the window.

Alexa Byrnes

That perfect, beautiful baby is suddenly yours.

Those short, stubby fingers, those extra soft cheeks, those beautiful, almond-shaped eyes, that single-crease palm, that beautiful latch you know she is working extra hard for — it’s all yours.

And then you will blink and the first year will be drawing to an end. You will relish the champagne moments you have achieved together. You will look back on the days when everything began, and you can sympathize with those new parents sitting in that office. But you came through it. And sometimes you wonder why you were so afraid.

This journey is truly the best. That’s not to say some days won’t be hard. But all you can do for them is pray everything turns out as it has for you.


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