What To Say to a Family with a New Down Syndrome Diagnosis
Updated: Aug 9, 2021
When a family receives a Down syndrome diagnosis, let’s start with what not to say: “I’m sorry.”
This journey into the world of Down syndrome may be unexpected. Parents may feel afraid or even feel a sense of loss—this is not what they imagined. Fear is normal. Grief is normal. Uncertainty is definitely normal. Let yourself feel it all.
AND alongside all that, one thing is clear: Down syndrome is nothing to be sorry about.
So what should you say? We called on the experts: the people who have been there before, the families who have received this very diagnosis for their loved ones. This is what they told us:
Ashlee, Maeve’s mom:
“We had a friend reach out to us recently telling us that they got a call from their geneticist saying they had a high probability [of a Down syndrome diagnosis] and, of course, I first said congratulations on your pregnancy! And then the next thing I told her was it may not feel like it right now, but it will be OK.
“But you’re allowed to be sad. I was very sad. I just think the most important thing we can do is validate feelings and not make someone feel bad if they don’t have automatic positivity. Toxic positivity can be the worst…”
Ashlee added that hearing, “Congratulations,” and “Everything will be okay” is great, but not every family is ready to hear it right away. “It’s okay to feel all the things you’re feeling.”
Let families know that, when they’re ready, you’re here to celebrate them and their new little one with joy. Until then, let them know that you’re here for all of it, drying tears, reimagining expectations, and lots of hugs and listening.
Sarah, Josephine’s mom:
I would say, “Everything’s going to be OK. Take a deep breath. And find your local/regional resources and advocates. The support system in this community is beyond amazing!!!”
We couldn’t agree more: when you’re ready, there’s a whole community here to support you, educate you, and experience the journey alongside you.
(In fact, our friends at Gigi’s Playhouse NYC added, “We’re here for you every step of the way.” They have some great programs—including virtual support groups for people across the country. When you’re ready, check them out.)
Rhonda said:
“Get ready for the biggest love of your life!”
Vicky, Harper and Jack’s mom, said:
“People with Down syndrome are beautiful!”
Eva invoked awe and life's beauty and wanted to remind families:
“Congratulations to your little wonder. You are all loved!”
Yes, yes, yes. Remember that you are loved.
When a family is feeling fear, Esmeralda would remind them:
“It’s scary now, but I promise there are better days ahead!”
And while this journey may not be what you expected, so many families who have been in those exact shoes of getting a diagnosis reached out with this message: this is the best thing that will happen to you:
“Might not be what you expected because it’s so much better!”
—Steven, Jackson’s dad
“Get ready for the adventure. It’s going to be fun.”
—Maritza
“Don’t be sad. Your world is about to become a more beautiful place.”
—Leanne
“Congratulations! Your baby will be the best thing that has ever happened to you! Down syndrome is love.”
—Chelsea, Rory ’s mom
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This is a thoughtful and compassionate resource for families navigating a new Down syndrome diagnosis. I appreciated the emphasis on choosing supportive, respectful language and avoiding assumptions during what can be an emotional time. I recently came across a similar discussion on bcbug, and it offered another perspective on approaching sensitive conversations with kindness. Thank you for sharing this guidance.
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