A Down syndrome diagnosis is unexpected and can be life changing for the parents, as well as their loved ones. Be prepared so you can offer support and compassion, not pity or ignorance.

We've all experienced situations in which we have no idea how to respond. What about when someone receives a Down syndrome diagnosis for his or her child, either prenatally or at birth? What's the "right" response? Moms of children with Down syndrome share what feels right and what hurts.

Is it OK to say, "I'm sorry?"

I thought any mistakes I'd made in life, any people I had hurt… somehow, my child now had to shoulder my penance.

Veteran parents of children with Down syndrome plead: "Don't say you're sorry!" Of course, veteran parents have had some time to adjust and get educated. As a mom who received a prenatal diagnosis, it never bothered me when I was offered an apology or even something deeper, that felt like condolences. Because now I know they were as uneducated as I was.

At the time, I was sorry, too. I could envision only the challenges my child was going to face. I could only hold my belly, sob and apologize to my unborn baby. I thought any mistakes I'd made in life, any people I had hurt… somehow, my child now had to shoulder my penance.

I knew so little

I didn't know how incredible parenting Charlie would be; I hadn't learned how a newborn could teach resilience or how a toddler's accomplishments could make my heart nearly burst.

The more we can help others understand what Down syndrome really means, the better our children will be embraced as incredible contributions to the world.

So, looking back, I understand the "I'm sorry" comments. That's probably why I'm passionate about sharing our experiences, because the more we can help others understand what Down syndrome really means, the better our children will be embraced as incredible contributions to the world.

Charlie is 3 years old now, and I completely agree with the following recommendations!

What not to say

  • "He doesn't even look like he has Down syndrome!" is Joanna's pet peeve. "Seriously? Like that's a compliment. I see it… and [my son] and his friends are the most adorable kiddos ever."
  • "What are you going to do?" Jenna says this question came from a friend of her husband's when she was just 16 weeks' pregnant. "I said, 'What do you mean? This is our baby!'" Happily, Jenna reports the friend is one of a few who have stayed supportive and gotten involved.
  • "Well, God only gives you what you can handle…" Mindi wants to throat punch people who deliver this line. Most parents are doing the best we can, and personally, it's too much pressure to hear God thinks we can handle more than the next mom.
  • "God only gives special children to special people!" makes Tamara cringe (and me, too). We're not any more special than the parents across the street trying to make ends meet and give their kids the best.
  • Sarah shares, "So many people told me over and over that the doctors must be wrong or we need to have [my daughter] tested again... I really needed everyone to accept the facts and move on."

Best responses

  • "Say congrats," Corey says. "Simply treat me and my child the same as any other newborn."
  • "My OB said he couldn't have thought of a better person to raise a son with Down syndrome," Jenn shares. "And that he knew we would give [our son] everything he needed and more."
  • "I know this is not the child you were expecting," was Larina's favorite. "Because that's always the truth. Even if you know that things happen in life, you still don't really expect to have a child with a disability."
  • "Oh my gosh, I have a baby with Down syndrome and he's awesome! He holds my heart like no one else," is Mindi's best advice. She adds, "By the way, that's what I say!"
  • Congratulations and silent preparation. "A baby is a big deal and therefore should be celebrated!" Tamara says. She shares how her sister-in-law began quietly researching Down syndrome. "So when I started down the 'was it something I did' path, she quickly jumped to my emotional defense and told me just how Down syndrome comes to be, and that the bottle of wine I had in the hot bath before I knew I was pregnant had no bearing on this."
  • "This is not going to be easy but all the work that you and [your child] do will be worth it!" is the direct approach Tamara says she wishes she'd heard.


Read more about Down syndrome

The truth about my child with Down syndrome
Having a sibling with Down syndrome
One mother's plea to stop use of the 'R' word

Photo credit: Jenn Scott Photography

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