To the Mom Who's Devastated by a Prenatal Down Syndrome Diagnosis


Michelle's daughter, Lily
My daughter, Lily

I’m talking to you – the mom who was devastated by the news that your baby has Down syndrome. I’m not talking to the mom who was barely fazed, though you are welcome to read on (and maybe you can give me some tips on how you keep so calm and cool). I’m talking to the mom who was literally brought to her knees thinking her life was over, thinking she might never bond with her child, thinking she would never feel happy again. The mom who cried for months – gut-wrenching sobs that wracked her body, sadness only hidden when her first-born was looking on (and probably not even hidden very well). Yeah, you. I want to say this as nicely as I can: get over it. I mean that in the best way possible, and I feel like I am totally qualified to say this because I was that mom.

OK, the grief and the fear are all part of the process, and there’s really no way to just “mind over matter” your way through this. Maybe it’s insensitive of me to even say that. But if I could go back in time, I would give my pregnant self a great big hug (if I could fit my arms around her – my belly was pretty epic, though not as epic as it was with my youngest!), and I’d tell her it’s going to be totally fine. Those BTDT (been-there-done-that) moms who are telling you that you will absolutely love your child just as much as you would love any other child, that your life will be full of joy, that a Down syndrome diagnosis isn’t the end of the world… they’re right! So, I’d give myself a hug, and then maybe slap myself across the face. OK, not really. But you know, something to jolt myself out of my state of self-pity, anxiety, stress and sadness. In hindsight, I wish I had relaxed, enjoyed my pregnancy, celebrated the upcoming birth and realized just how much love and joy my new daughter would bring to our family. Yes, there are challenges, and the Down syndrome does continue to be a source of fear and some sadness when I get too focused on the what ifs and the future unknowns. However, the grief and fear I felt while pregnant is nothing compared to the love I now feel for my daughter. I look back and feel utterly ridiculous. So, to the new pregnant mom, I don’t want to belittle your feelings. I do, however, want to give you hope.

I want to share a private moment with you that I hope will do just that. The other night I was cradling Lily, my 4-year-old who has Down syndrome, in my arms because she likes me to “hold her like a baby” before bedtime. I was feeling overwhelmed with how very much I love her and how very much I still struggle with feelings of guilt over my reaction to the prenatal diagnosis. When I said above that I was a mess, I’m not exaggerating. If anything, I’m downplaying it because words cannot adequately describe how devastated I felt. I said to her, “When you were in my tummy, I was really scared because I didn’t know if I could be a good mommy to you.” To be honest, I was tearing up a little bit. She reached up and held my face between her adorable little hands and so sweetly said, “I love you, Mommy.” Then she gently tapped me on the tip of my nose with her index finger and said, “Boop!” in her silly voice, and we both started giggling.

Many pregnant moms with a prenatal diagnosis worry about the future, and some go so far as to consider terminating the pregnancy because they worry about whether they’ll be around in the future to protect their child. To those moms: I recognize that those are valid concerns. But you are around now and you can keep your child safe now. None of us have a guarantee of the future. None of our kids (even those born without an extra chromosome) have a guarantee of lifelong health and future independence. All we can do is care for our children through every stage. Your child right now is in the stage of “not-yet-born,” but is no less deserving of a chance at life and is in no less need of being kept safe. If you’ve made up your mind to terminate the pregnancy, you should at least know a few data points:

Most people with Down syndrome are much happier and more satisfied with their life than the typical population. In fact, in research led by Dr. Brian Skotko, 99 percent of individuals with Down syndrome reported being happy with their life, 97 percent like who they are, and 96 percent like how they look. The majority of families surveyed reported having a more positive outlook on life, and the vast majority of siblings said they felt proud of their sibling with Down syndrome and confident they were better people because of them. I know it’s scary. I was once in your position and took the prenatal diagnosis about as hard as one can; I too thought I couldn’t possibly handle it.

What I had to realize is whether you receive a prenatal diagnosis or not, no pregnancy or child comes with any guarantees. Those of us with prenatal diagnoses simply leave our “pregnancy bubble of ignorance” sooner than most. The point is, we all have lofty dreams for our kids, but it’s important to remember that those are our dreams. The sooner we let go of that and embrace our child for who they are, the happier we will be. While no pregnancy comes with a guarantee of health or future independence, they all come with love. That might sound cliché, but I have yet to meet a mom who doesn’t love her child. (Though I’ve met plenty of moms who doubt their abilities or feel they aren’t good enough.) While every mom who has a child with Down syndrome is at a different stage in her journey, what they, along with the rest of my mom-friends, all have in common is a love for their kids beyond words.

After your baby arrives, your worries and fears won’t go away, but they will pale in comparison to how fiercely you will love your child. Don’t let fear win. Your child needs you now. You can sort out the future later.

A Version of this post first appeared on Home in the Shire.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

Related to Down Syndrome

Finalist's photographs

Down Syndrome Association Photo Competition Highlights Talent of People With Down Syndrome

For the past six years, the Down Syndrome Association has been honoring the talent of people with Down syndrome through its “My Perspective” international photography competition. The photo competition, sponsored by GlaxoSmithKline, turns the camera around and gives people with Down syndrome the chance to show their points of view. And their points of view are stunning. The [...]
Ramey and Leslie.

To the Friend Who Taught Me 'Normalcy' Isn't Everything It's Cracked Up to Be

“Do you want to go to CVS?” I ask Ramey, although I already know the answer. She lights up like a Christmas tree, a smile spreading across her face, and says, “Yes,” her voice trailing out the “s,” as she tends to do when she says words with an “s” at the end. “All right!” [...]
daughter with down syndrome playing at waterpark

To the Red Haired Girl at the Splash Pad Who Asked About My Daughter With Down Syndrome

I saw you with your frizzy red pigtails, freckled face and soaking wet yellow dress. I saw you watching my daughter. I saw you sitting near her, not too close, but close enough to watch her expression as she concentrated on watching the buckets fill with water and then pour down. Most kids would be standing [...]
Close up portrait of man outdoors with digital tablet.

When We See Insults About Down Syndrome Online, What Should We Do?

Social media has great aspects. It allows parents like myself to find each other and connect. We can ask each other questions, brainstorm ideas and share resources. I love being able to find other parents online because I often can’t meet in person with other parents of children with special needs due to Jaycee’s care and busy [...]