To the Parent Who Just Received a Prenatal Down Syndrome Diagnosis


Woman holding baby in autumn park
Photo credit: Nicole Modeen Photography

Being that it’s October and Down Syndrome Awareness Month, I couldn’t help but relive our diagnosis process in my head. After all, it’s what got us here in the first place. I wrote this letter for those who haven’t embarked on their journeys yet, so closely recalling the start of my own…

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 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. And 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 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 it’s OK. 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 fill 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. 

Black and white photo of mother holding newborn baby

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… is all yours.

And then you will blink and the first year will be drawing to an end. You will relish in 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 what you were so afraid for. 

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.

We want to hear your story. Become a Mighty contributor here.

TOPICS
JOIN THE CONVERSATION

Related to Down Syndrome

Jillian and her son.

To the Doctor Who Said I Could Let My Baby With Down Syndrome Die

Dear Doctor, Two years after you delivered the news that our son would be born with Down syndrome, I still struggle when reliving that surreal 20 minutes in your white-walled office. In fact, I blocked the memory out for a while. My mother had to remind me of the things you said that day for [...]
three photos of a young boy with autism smiling

Meagan Nash Asks OshKosh B'gosh to Include Her Son, Who Has Down Syndrome, in Its Ads

Update: On October 25, Asher Nash and his family met with OshKosh B’gosh, and Asher will be modeling in the company’s holiday advertising.  Asher Nash is breaking the internet. In less than a week, a photograph of the 15-month-old has racked up over 59,000 likes and 79,000 shares on Facebook. Now, his mom, Meagan Nash, [...]
little girl wearing a shirt that says kindness matters

The Encounter That Reminds Me Why I Love Down Syndrome Awareness Month

I love October! First, we get to celebrate the birth of my daughter KC and the incredible blessing she is to our family. Second, it’s Down Syndrome Awareness Month! You may wonder why that’s a thing and why I’d be excited to spend a whole month spreading awareness, and to answer that I’d like to [...]
sister and brother smiling

My Brother Was the Kid the World Was Against

Down Syndrome Awareness Month exists so we can celebrate the abilities and accomplishments of individuals with Down syndrome. We honor this month so we can show the rest of the world these individuals are more than their disabilities. From a young age, these people are often told their disability will hinder them and they will accomplish very little. [...]