Tuesday, January 17, 2012

What To Say/Not To Say When Your Friend's Baby Has Down Syndrome

Down syndrome is the most common genetic variation present in the womb. Sure, there are other genetic conditions, but Down syndrome is the most common condition. This is the reason why it is one of the prenatal tests most commonly available and offered to expectant mothers.

Over 6 years ago, our dear 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! In fact, I turned out to be a lousy friend. At first, I avoided to talk about it with them because I did not know what to say. Later, when I finally said something, well… I probably should have kept my mouth closed! Fast-forward 2 years after Jennifer’s birth, and our daughter Nichole was born with Down syndrome. You can read about that story HERE.

Now, I do want to point out here, that 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. However, there are some statements that are better not said, as well as some encouraging words that can be shared.

Don’t say:

-God gives special children to special parents.

First of all, this is not true. We are most likely struggling inside trying to make sense of what just happened and this comment puts on a lot of pressure and high expectations. We do not have more love, acceptance, or compassion compared to the family that just gave birth a room away from our own. 

-I am 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. Hey, I felt sorry when I had Nichole because I knew so little about it! However, to hear other people say it was devastating. It reassured me that this indeed was really, really bad. What is most important, as I look back to those feelings, I can tell you there was nothing to be sad about. Be sad that Nichole had a heart condition? That is different. Be sad that her liver seemed to be failing? That is different. But sad that she has Down syndrome? No, not at all! On the contrary, there is so much to celebrate!

-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. My daughter with Down syndrome was sick due to a liver condition, God helped her body work properly and we have never had to deal with this again. Down syndrome is not a disease, it is not an illness, it is a genetic condition. Genetics determine the color of our eyes, our hair, what our nose looks like, the size of our ears, how tall we will be. People are not “sick” with Down syndrome any more than you might be sick over your frizzy hair. God says that we are fearfully and wonderfully made, he knitted us together in our mother’s womb, and His works are perfect. God does not make mistakes.

Do say:


 Every life is worth celebrating.

-If it is a close friend, it is okay to ask, “How are you handling the diagnosis?”

-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. 

-Treat and talk about your friend’s baby with Down syndrome the same way you would if the baby did not have Down syndrome. 

-Say you are available if your friend needs to talk about anything. You can admit that you don’t know what to say, but you are available.

Edited to add: I am grateful for our friends that extended grace to me even as I said the wrong things. I hope that I have extended the same grace to comments that have been made to me. I cannot expect people to know what to say or have the same level of understanding that I do. So be assured, a true friend will not hold a comment made with good intentions against you! We are all learning together!

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?

If you do not have a child with Down syndrome, I hope this is helpful to you. Really, when we say we love Down syndrome, we really mean it! I mean look at my little rascal up there, how could you not be smitten?

Linked to:
Soli Deo Gloria
Teach Me Tuesday
On Your Heat Tuesday
Titus Tuesday
No Ordinary Blog Hop
On, In, and Around Monday

Women Living Well
Word Filled Wednesday
Works for me Wednesday
Winsome Wednesday


  1. Hi neighbor!

    Somebody just posted this on Twitter and it caught my eye :)

    Best response after my son was born was from my brother-in-law: "Congratulations!" (He grew up with a neighbor with Ds and thought he was a great guy.)

    Worst response: "Well at least he doesn't have "chinky" eyes." Seriously! But no one has ever accused my mother of being sensitive to others. :0

    Bottom line is that most people mean well even if their responses are somewhat awkward. They'll become more informed over the coming years as they get to know our beautiful children who happen to have a spare chromosome.


  2. Thanks Barb for sharing this:
    "Bottom line is that most people mean well even if their responses are somewhat awkward. They'll become more informed over the coming years as they get to know our beautiful children who happen to have a spare chromosome."
    You are absolutely right!

  3. Awesome post and so true! I'm not sure if you waded through all the comments on Aaron Shust's blog, but one of them was from a lady who claims to be "interceding for the healing of all children with Down syndrome." Ugh. I sent her a message and she responded (strangely, though). It boggles my mind when Christians just can't accept that our kids are fearfully and wonderfully made. Sigh.

  4. From my experience I think that extra chromosome is packed with love,and oh, so joyous. We were offered an abortion because my numbers were borderline. (20 years ago)I guess it was the law, but I was hurt and insulted!

  5. What a helpful and beautiful post.. It is interesting how people say things that mean well in times that can be painful.. like when my sis had a miscarriage some people said some wellmeaning things that were not the best things to be said.. so I love your last part about how we are all learning together

  6. This was a beautiful post and I am so glad you posted it. I plan to tweet it as it has such good info. People say so many hurtful things out of ignorance and lack of thinking. All children are cause for celebration. This little girl is precious! And beautiful.

  7. Visiting from SDG for the first time. I think this is a helpful post. I grew up with a girl with Down Syndrome. We went to (public) school together most of our childhood. I took swimming lessons at her parents' pool and spent a lot of time there. I knew she was different in some ways, but we grew up together and that was a gift. I learned that it was okay - normal - to include her in everyday activities and that she had a lot to contribute. I hope that your daughter has the opportunity to interact with other children that way as she grows up. It will be such a gift.

    P.S. She is beautiful. Love that smile.

  8. I cringe to think of how many times I may have worded something wrong when trying to express what was in my heart. I don't honestly feel sorry for people with DS or other special needs babies. I think in many ways they are blessed in ways I know nothing of.

    You little girl truly is BEAUTIFUL! And not because she has Down Syndrome...but because of that sparkle in her pretty little eyes that can only come from the heart!

  9. Hello Barb, Just to let you know, I am Jonell Ruth Moore's little sister - she was the most amazing, incredible person I have ever known and she had Down Syndrome. She died when she was 58 years young and my other sister, Faye, and I were by her side. My life is rich because I had the sweet privilege to have our Joni in it.
    Your life, and all those who are close to you will be enriched as well. Sure, some times will be tough, just like they were with us, but I would never change a bit of it! Blessings!

  10. Thanks, Ellen! So many of us really don't know what to say- do we!? My dear friend who has a little girl with Down Syndrome had the hardest time when people would say, "Congratulations" or "What a blessing!" or "You've been blessed" She just wasn't ready to hear those things yet.
    I always appreciate how you share your story with the rest of us!

  11. Thank you for sharing this...it helps to know what to say as much as what not to say.

  12. Bless you for sharing this.

  13. One of my close friends was pregnant at the same time with me and my 4th child. There was so much love in my heart for them and their baby - and I was so scared because I wanted to encourage. They moved shortly after I had my. Thank you for advise on how to encourage and let your heart speak your love!

  14. This has such wonderful information! I've worked with families who have children and young adults with Down Syndrome, and I love being around them and their children. It is hard to know what to say to new parents, though, because I know that everyone can be in different places emotionally.

    Your family is adorable!

  15. Thank you for sharing this post. I have a friend who has a son with Down Syndrome and he is the happiest, most lovable kid!!

    It's always hard to say the right things in awkward situations, but it helps when we can share our experiences with others. I struggled with infertility for almost 9 years and it was hurtful to get comments from friends and even family who meant well, but just didn't know any better.

    Your daughter is beautiful!

  16. Thank you for sharing your insightful and sincere post! All children, with or without Down Syndrome, are beautiful gifts from God as you so eloquently stated. Children teach us so much about our Creator and Down's children, I think even more so! Your daughter is beautiful with a radiant smile! You are blessed and I will remember your advice! Thank you for linking up to NOBH! :)

  17. I think so often our desire to say something, anything, wins out over just keeping our mouth shut! When my son was diagnosed with autism the comments left me absolutely speechless and heartbroken. I'm sorry; how devestating for you; special needs kids can do so much now, yesterday I saw a child with DS working at Walmart...I would rather hear someone talk about how God made these babies with a PURPOSE! Thank you for this post!!!

  18. hi found you from pinterest...I have a blog too and was thinking of a post like this also, of course your words so so beautifuly put, maybe I wont :)
    Anyway one of the worst things said to me was by my husbands mother...."well at least you have three other healthy children"
    Yeah seriously not the right thing to say, ya think?
    I know what you mean about everyone takes it differently, I am still very careful about what I say to new parents....I just want to scream you are so blessed and this is going to be a crazy wild but so worth it ride but that may scare them , lol. I want to tell them so much but I know they will see the beauty as time goes by.
    Your daughter is beautiful


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