Down syndrome is the most common genetic variation present in the womb. It is estimated that Down syndrome occurs in 1 out of every 691 births .

what to say or not to say Down syndrome

Almost eight years ago, our friends received their first-born daughter into the world, and she was born with Down syndrome. This is where I wish I could tell you that I knew exactly what to say to them when Jennifer was born, but I did not. I had no experience with children with special needs, and it was the first time one of my friends was dealing with a diagnosis of any kind. In fact, I turned out to be a lousy friend. At first, I avoided the topic of Down syndrome because I didn’t know what to say. Later, when I finally said something (I told them I was sorry), well… I probably should have kept my mouth closed. Fast-forward two years after Jennifer’s birth, and our daughter Nichole was born with Down syndrome. You can read about that story HERE.

Every person is different. Our personalities, our outlook in life, and our backgrounds do affect the way we handle and perceive things. The most devastating comment I received came from a parent of a child with Down syndrome. This was the exact same comment that was the most encouraging and uplifting to our friends. As you can see, there is no magic formula to know what to say or not to say.

But here is a general guide of what to say or not to say when your friend’s baby is diagnosed with Down syndrome:

Don’t say:

God gives special children to special parents.

It’s not true, there isn’t anything special about us. We are most likely struggling inside trying to make sense of what just happened and this comment brings on pressure and high expectations. We do not have more love, acceptance, or compassion compared to the family next door.

I’m sorry.

It is okay for you to feel sorry; you probably don’t know much about what it is like to have a child with Down syndrome, I sure didn’t before I had my child. Remember, I even told our friends I was sorry, and they quickly (and gently) explained they didn’t like that statement because it got in the way of celebrating a new life, and they were not sorry they had a child. Once I had a baby with Down syndrome, I recognized how hard it was to hear that statement. To hear other people say it was devastating. It reassured me that this indeed was really, really bad. It also put all the attention on her diagnosis, and not on the beauty and celebration of her new life.

I will pray for God to heal your child.

This is a big one! Please do pray for healing of medical conditions. However, do not pray for God to heal a child from Down syndrome. Down syndrome is not an illness. People are not sick with Down syndrome, it is a genetic condition.

Here is my favorite passage in the Bible:

Oh yes, you shaped me first inside, then out; you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out, you know every bone in my body.
You know exactly how I was made, bit by bit, how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you,
The days of my life all prepared before I’d even lived one day.

– Psalms 139:13-16 The Message

God’s works are perfect. God does not make mistakes. We are all – yes, all of us – a masterpiece.

Do say:


Every life is worth celebrating.

-Ask, “How are you handling the diagnosis?”

This is where it is okay to say “sorry.” If your friend is really struggling, do say, “I am sorry you have to go through this grief, I am here for you, and I know soon you will be wiping the tears and experiencing great joy.”

Tell the parents how beautiful their baby is! Babies with Down syndrome are some of the most beautiful babies. And they just melt in your arms. point out the cute button nose, and the beautiful almond shaped eyes. Make a big deal, reminding the parents that their baby with down syndrome is a baby first of all, and babies are irresistible.

Tell your friend you are available if she/he needs to talk. You can admit that you don’t know what to say, but you want to learn along with them.

I know many people shy away from saying anything in fear of saying the wrong thing. Don’t be a stranger to your friend. Better to say the wrong thing but let them know you are willing to learn, than to look the other way and avoid your friend. Be assured, a true friend will not hold a comment made with good intentions against you.

Do you have a child with Down syndrome? Is there something that was said to you that was inappropriate? Is there something that was encouraging? What do you wish someone had said to you, or what do you wish people had kept to themselves?

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