What to Say When Your Friend’s Baby Has Down Syndrome

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Yesterday, someone stumbled onto my blog by searching “what to say to parents of newborn down syndrome.” I thought I’d answer the question, especially apropos since October is National Down Syndrome Awareness Month (at least in the U.S.).

It’s very simple. Here’s what you do and say:

First, bring a gift (a receiving blanket, an adorable outfit, a rattle). Second, say “Congratulations!” or “Congratulations on the birth of your baby boy/girl!” or “Oh, (s)he’s beautiful!” Then ask to hold the baby (if you can). Just like you would with any other baby. The birth of a child is something to celebrate, and an extra chromosome doesn’t change that. Your friend’s baby is a gift, just as any baby is.

Having said that, realize your friend might be grieving. All parents have to grieve the loss of the perfect child they thought they were having, but most people get to do it in tiny increments spread over several decades. With Down syndrome, you know right away that your child isn’t the athletic brain scientist with a model’s body that you thought you were having. But if you accept the baby with joy, it will be easier for your friend to–even if she thinks you’re nuts at first.

If you have positive experience with Down syndrome (i.e. a cousin or a friend had it, and they did fine/were adorable/whatever), share it. When our daughter was born, our family practitioner told us he’d grown up in an isolated rural area, and his only playmate had Down syndrome. The boy was born to an older couple who had long given up hope of having children, and he was a joy to them all his life. To my doctor, growing up as his best friend, he was just John (or whatever his name was). This was very comforting to hear.

If you don’t have personal experience, check out this entry, and then you can say, “I just ran across a writer’s blog, and she has a daughter with Down syndrome who is just adorable!” (She really is adorable–go check her out!)

Give them a copy of Kathryn Lynard Soper’s book Gifts. Because Gifts tells the stories of 63 different parents, it’s a chance for your friend to meet 63 people who’ve already been there. And because it’s in a book, which she can take in little or big pieces, as she wants, it’s even less threatening than having to meet them face to face.

Your friend may be dealing with life-threatening problems (babies with Down syndrome often have heart defects, for instance). Here, you might be able to help. Offer to care for other children if they have them. Bring in meals. Visit them at the hospital (and bring food that isn’t cafeteria food). Run errands for them. Ask how the baby is doing.

Try to get the terminology correct. In the U.S. it’s “Down syndrome,” not “Down’s syndrome” (because it’s named after the guy who identified it, not someone who had it). And it’s a “baby with Down syndrome,” not a “Down’s baby.” I know this sounds really nit-picky, but it’s important. This way, it’s a baby first, who happens to have DS.

If there is a Down syndrome support group in your area, get a contact number for your friend. But don’t be surprised or hurt if she doesn’t contact them for a long time (or at all). Everybody has different needs.

Mostly, your friend just needs to know you love her and that you will love the baby too. She needs to know you aren’t going to run away and hide. And she might need to borrow your optimism (if you don’t have any, fake it).

Finally, there are a number of things NOT to say:

“You’ll be fine because you’re so strong.” First, you don’t know that. Second, your friend doesn’t feel strong right now, and this heaps impossible expectations on them. Third, we (parents of children with DS) are no stronger than anyone else. Strength develops in crisis; it wasn’t there before. Trust me: if you are blessed with a baby who has DS, you’ll develop the strength too.

“God chose you to be the parents of this special baby.” First, you don’t know that. Second, as a parent hearing that from a friend, we tend to hear a subtext tacked on: “and thank the Lord he didn’t choose me!” which makes it a backhanded compliment at best. Third…oh never mind why it’s offensive, it just is.

“They’re all so sweet!” (or loving or good or happy or whatever). If you find yourself saying “they all…,” stop! First, it feeds into the they-versus-us mentality. Second, the DS population is like every other population, and “they” aren’t “all” anything. Some people with DS are sweet; some are surly. Some are happy; some are depressed. Etc. (As I said before, however, if you have personal experience, it’s absolutely acceptable to say, “I knew so-and-so, and she was really sweet.”)

“Don’t worry. The baby will be fine.” Again, you don’t know that. Babies with DS face enormous physical challenges, and some of them don’t make it. And Down syndrome is a pretty wide spectrum: while the vast majority of people with DS are mildly mentally disabled, some are profoundly disabled, and they won’t be “fine” by the standards a brand-new parent holds. False hope is false hope, no matter how lovingly it’s given.

“Oh, dear. She’ll never be able to _________” (fill in the blank: walk, read, drive a car, live independently, get married, etc.). First, you don’t know that (hmm…this is beginning to sound repetitive). Second, it’s probably not true. Until very recently, most of the research on Down syndrome was done on a population institutionalized at birth. So any statistics older than 10 years or so are probably grossly pessimistic. Third, even if it were true, it’s too much to take in all at once. Unless you can tell the future and never get it wrong (joke!), don’t make any prophecies about the future, positive or negative.

Last, do not (do NOT!) use the word “mongol” or “mongoloid” or “retard.” I know it’s hard to keep track of the current phraseology (I have trouble with it too–is it mentally handicapped or mentally disabled?). But these words are as old (and as offensive) as the “N” word.

I suspect I’ll think of many more things well-meaning people have said that hurt, but this is a good start.

In general, be supportive. Express love. Accept the baby. You’ll do fine. The very fact that you bothered to look this up tells me that.

ETA: If you see Google Ads at the top of this post, please know I did not request them and do not want them. Please do not encourage the monster by clicking on the ads, no matter how badly you may suffer from Irritable Bowel Syndrome. And thanks for popping in! The good news, they tell me, is that if you return regularly, the ads magically disappear.

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47 Responses to “What to Say When Your Friend’s Baby Has Down Syndrome”

  1. Denise Dwyer Says:

    Well done and congratulation. I love your site. You have hit the nail on the head. I have a little 4 year old with down syndrome and over the last 4 years I have heard all of the above. Sometime I would seeth with anger over what was said to me, sometime I would put the individual straight but oh how they do not listen and repeat the same thing again!!!! Oh please let loads read your website as it is so enlightening. Well done and keep it up.

    Regards

    denise dwyer

  2. katrinastonoff Says:

    Thank you, Denise. I really appreciate the feedback. I threw this together one day when I noticed a fair number of people stumbling onto my blog by asking “What do I say Newborn Down Syndrome?” but of course, it reflects my experiences.

    Is there anything I should add to it?

    I’d estimate that 2-3 people a day find this entry by doing a search string like the one I mentioned. So hopefully it’ll save a few families some of the grief anyway.

  3. Michelle Z Says:

    I know I’m WAY late on discovering this post, but I love it! Can I link to it?

  4. katrinastonoff Says:

    Hi, Michelle. I love your blog. Your Ruby is ADORABLE! And, oh my goodness, I want one of those T-shirts for everyone in the family — the one that says “My entire life is being blogged.” ROFL.

    Yes, of course you can link to the entry. Please do!! And feel free to make suggestions. I’m sure I haven’t covered everything.

  5. Andrea Says:

    Thank you for this information. My best friend had a precious little girl on Monday and her daughter was born with DS–she was not aware of this prior to delivery. I don’t want to do anything to upset her. Her daughter, Mya, IS cute as pie and adorable. My friend and I have a very open friendship, we’ve always been very direct with eachother, but this is the first time that I felt like my true thoughts were probably inappropriate—I’m sad, upset, shocked, I’m worried about my friend, I don’t want people to treat her daughter any differently–or to look at her in a way that would cause Amy any heartache. Again, thank you–you helped me a lot.

  6. katrinastonoff Says:

    Andrea, thank you. That’s very sweet. Your friend is lucky to have you in her life (and you’re both lucky for the gift of this little girl!). If she’s your best friend, and you are open with each other, don’t be afraid to acknowledge her grief. Try not to be appalled if she expresses something a mother “shouldn’t” feel. She feels what she feels. And it IS a shock.

    You can probably express exactly what you expressed here: 1) “your daughter is adorable,” and 2) “I’m worried about you.”

    People *will* treat her daughter differently, but it’ll be OK. She’ll find her way, as will your friend. Good luck. It’s a roller coaster, but well worth the ride. :-)

    *hugs*

    (Feel free to e-mail me: katrina *at* stonoff *dot* com).

  7. Robin Z Says:

    Great, great blog entry! My son, Caleb, is 15 months and I have also heard most, if not all, of the above. The worst comment I got was, “At least you won’t have to worry about college costs”, which, how inappropriate to say at the birth of a baby? It makes me all that much more determined to send him off to college someday :) The best comment I got was, “My aunt has Down syndrome, and I can honestly say I’m a much better person because of her.” It still warms my heart just thinking about that comment. It was definitely the right thing to say and so true, as I definitely think I’m a better person since Caleb’s birth – more compassionate, more loving, and more focused on what’s truly important in life. Thank you for your great words!

  8. Friend of new parent Says:

    THANK YOU! Thank you! Thank you! My boss’s wife just gave birth to a baby with DS and I had no idea what to say, how to act, or what to do. Your post has helped me tremendously. I will welcome this little miracle like any other newborn is welcomed…..cards, presents, offers to babysit, etc. Thank you for your advice at such a difficultly bittersweet time.

  9. Linda W Says:

    I’m glad I stumbled across this. I have a beautiful 7-month old daughter born with Trisomy 21. I have had many of the above comments, and some very hurtful ones as well; one of those being; “you knew the chances this could happen when you got pregnant.” Another words, you are of advanced maternal age and you should have expected it. This of course both before and after I gave birth to my beautiflu baby girl.
    I wish I could e-mail this to everyone I know so they could try to understand that some of the things they say don’t help.

  10. katrinastonoff Says:

    Robin: YIKES! I can’t imagine even thinking that, much less saying it! I, also, am a better person since my daughter’s birth. Both stronger and more compassionate.

    Friend: You are welcome. Thank you for your kind words. And good for you for looking into what to say! You’ll be fine — and you’ll all be more joyful and more loving for the gift of that babe. Eventually, anyway.

    Linda: Congratulations! And … ugh! The things people say. *sigh* Enjoy your baby and try to ignore those kinds of comments. People who make them just don’t know what we know, poor things.

  11. samantha Says:

    thank you for this post- I had a friend that had a DS baby and it was a surprise to everyone, I felt so dumb when I said, I am so sorry, and she said for what? She was so happy to have a beautiful baby- so I hope your post will help others

  12. Valerie Grunsted Says:

    Katrina, this page was a lovely find. Our son with DS is now 5 months old, and we too have had these things said to us. We even had one health professional (an older female physician, from another culture) suggest we send our son “away” (to an orphanage). Unbelievable! I can’t imagine my life without our sweet boy… in his short time with us, he’s been such a wonderful reminder about the preciousness of every day. Thank you for helping to educate others with your website. All the best to you and your family!

  13. katrinastonoff Says:

    Samantha: It sounds like your friend handled it really well. And it is one of those situations where one doesn’t really know what to say (hence is likely to say the wrong thing).

    Valerie: Oh, my goodness! How very sad (and horrible!). I didn’t think anyone still recommended that (not to mention, we don’t even have orphanages in the U.S. anymore — though there is a waiting list for people wanting to adopt babies with Down syndrome). Thank you for lovely sentiments. And enjoy that baby of yours!

  14. jodi Says:

    My girlfriend just delivered and found her baby to have DS. Luckily I said the right things. I want to give her and her husband time, but I AM a VERY positive person and would love to welcome this baby. How soon is too soon to stop over? Flowers sent, etc….Is is appropriate to stop by myself with Dinner for them (then leave?). Please give me your suggestions!!!!!!

  15. Sandra Says:

    What a great article! Seriously, this should be published where more people could benefit from it. You covered a lot of issues in a few short paragraphs. Well done.

  16. How to Talk to the Parent of a Special Needs Child : Mom-Blog: Parenting, life, growth, and sanity Says:

    [...] additional reading, check out “What to Say When Your Friend’s Baby has Down Syndrome“, should you come across this situation for a new baby. Share and [...]

  17. A friend Says:

    I wanted to thank you for this as well. I got here with similar phrasing – and I felt really prepared to be just as loving and welcoming to our friend’s new baby boy and be a shoulder and support to our friends. Knowing what not to say kept my foot firmly out of my mouth, and I really appreciate your candor.

  18. Friend Says:

    Thank you so much for this post. My friend has just had a baby with Down Syndrome (she had no idea before the birth) and I wanted to make sure I was saying the right things. I am now going to follow your blog!

  19. Keeley L Says:

    Hi

    I just wanted to say that nearly 3 years after you first wrote this, I ave just come across it via Google and I wanted to say thanks. My friend had her son last week who has DS and they didn’t know in advance. She’s been a nanny previously to children with DS so she has a better awareness of it than most new mums in this situation but her husband was distraught. You’re article was just what I needed to read :)

    • katrinastonoff Says:

      Keeley, how very sweet of you to comment. I’m delighted that you’ve found my entry.

      Your friend’s husband will be fine. That little boy will completely win him over.

      You’re all about to fall in love. :-)

  20. Kimberley Says:

    A work acquaintance just had a little baby with down syndrome, and was totally unexpected. I’ve fallen apart since hearing the news and was wondering if I’d said the right things today. I grew up with a friends little sister who had down syndrome and actually bumped into her last week with her Dad. She is living on her own and has her own job. I told him what an incredible person she was and that her life was equally as amazing, just different than her families first thoughts. He fell apart over the phone, I was strong until I hung up. I wonder if people turn up in your life to help you help others? It was too coincidental seeing my friends sister the other week.

    • katrinastonoff Says:

      You’ve got me in tears, Kimberley. What a wonderful anecdote.

      Yes, I absolutely people are sometimes sent to you to help you help other people.

      When my daughter was born, our doctor told me about his best friend growing up. It was a boy with Down syndrome — born late in life to parents who were thrilled to have him, and the only other child in the neighborhood for our doctor to play with. I could see the love in his eyes as he spoke, and it was a balm to my ravaged mother’s heart.

      It sounds like you were a wonderful friend. :-)

  21. Anonymous Says:

    As a nurse who often takes care of patients (and their families) with a new diagnosis of Down Syndrome, I love this post! I hate it when people say…well, most of the “dont’s” you have listed here. Thanks for posting this.

  22. Down syndrome 101 | Matthew Nicholas Vawter Says:

    [...] For more information for friends and family, read this other mama’s great post, “What to Say When Your Friend’s Baby has Down syndrome.” [...]

  23. Nicki Says:

    I have a friend that just found out her yet to be born baby boy has DS. Of course she was distraught at first because of the unknown and is coming around to accept it. However, she does NOT want to hear all the wonderful things about DS children. And, her husband is apparently being VERY unsupportive emotionally. Also, his family. They also have 2 other grade school aged children that do not have DS.

    Yesterday, another friend and I spent the day scrapbooking with her. I wanted to talk to her about how she was feeling. She asked did I want to know about her or the baby. I said actually I wanted to know about her, but she could talk to me about the baby too.

    I saw the book GIFTS and was thinking about getting it for her, but our mutual friend, who is really her BFF, said NO. She doesn’t want anything like that.

    I have never personally known anyone with DS. But, I do know the challenges of a child with sensory issues and social issues and the difficulties they have in a NORMAL environment. It has taken me 10 years to finally find people who actually listen to me, that there is a problem and find a school that he feels safe in!

    My stomach is in a knot for her. I don’t want to do or say the WRONG thing. She said their greatest concern is not knowing what health issues the baby will have.

    So, should I get this book and read for myself? And if so, if or when should I give it to her? I think she feels very alone. I am not as close of a friend as our mutual friend who told me not to give it to her, so what do you think?

    I want to help, not cause her distress. Thanks.

  24. Nerida Says:

    Your blog just keeps on helping! Dear frinds had a little girl on Friday and she text me to let me know and that she has DS. We are living overseas at the moment, I didn’t want to reply buy text and I didn’t want to say the wrong thing because your right sorry is not the right thing to say along with all the others that you mentioned.

    So I read your page, contacted another friend who has a beautiful 5 year old with DS and asked her if I could pass her number on if they wanted to talk to someone who has been there. She of course said yes.

    I felt empowered not be able to ring with with an offer of someone to talk to who will understand, whether she calls or not so thank you.

    Nerida

  25. Two Special Needs’ Daughters – One GREAT Mom! | momcoloredglasses.com Says:

    [...] What to say when your friend’s baby has Down syndrome [...]

  26. Anonymous Says:

    Thank you for the helpful advice. I hope I can express the positive to those I know who need to hear it.

    Anne M

  27. Anonymous Says:

    I was picking my granddaughters up from school today and noticed a new mom with a Down syndrome baby…she was with other moms but brought her other young child over to pet our dog…not if it was my imagination, but it seems she was almost protecting her Down syndrome from my view…what does a stranger say to a mom…this child is/was precious…thanks

  28. Down Syndrome and the Medical Community: Stop It Already : Mom-Blog: Parenting, life, growth, and sanity Says:

    [...] Why should the birth of a baby with Down syndrome NOT be a joyous, fulfilling event, like any other …?  I’ve said since the beginning of my journey with Amelia that a baby is not a guarantee. Anything can happen at any time, and once that child has left your body they are on their own trajectory that you can only guide for a short time. [...]

  29. Britta Says:

    Thank you so much. My sister in law has Smith Maginnis Syndrom. My friend was always freaked out by her whenever we had parties and her children were afraid of Margy…well, my friend who is a dear friend, our first three children are all very close in age, just had a baby with down syndrom tonight. I really needed some help/advice in going to see her and beautiful Baby Evan. Thank you

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  32. kms Says:

    Short and simple…..the same thing you would say to anyone that just had a baby

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  34. Friend of a Future DS Mommy Says:

    Katrina,
    I found this blog entry so helpful. A very dear friend of mine just found out at 13 weeks pregnant that her little girl has Down Syndrome. Do you have any words of wisdom of how I can support her/handle myself through the next challenging months? I know she knows that ultimately she will make the most of the situation she is now faced with… she doesn’t need me to say that to her… but I can’t think of anything else TO say. Any advice would be great.

  35. Anonymous Says:

    This is awesome. I remember playing /hanging out with a little girl who had Down Syndrome when I was a preteen. I was mortified when later I was “commended” for being a friend to her. I genuinely enjoyed her and how she was so openly loving and affectionate with everyone. Not to stereotpe… But I heard once that the extra chromosome was love… And thought bingo, so true. Hopefully we can help parents and support them so they can feel fantastic about the miracle of their new baby, and kow they have the support of many to get through the tough stuff.

  36. JJ Says:

    I stumbled across your page while doing some research for an Education Support Officer assessment. The comments of what not to say a truly valuable.

    Your page reminded me of when my eldest son Matt started high school with a boy with loads of character whom happened to have Down’s Syndrome attended the Year 7 school camp. Trent had his bag packed like the rest of the year by his parents ticking off the checklist of necessities. Trent added his personal touch of having a photo of his family, pets, and house glued to his bag. He participated in the activities at levels he felt comfortable with. The other students learnt how to include him in the activities. When learning about safety in the bush and how to move an injured person on a stretcher Trent volunteered to act as the patient. When my son came home from the week of camp Trent was the highlight of the conversation. Matt has always loved playing guitar along with many of his friends. Trent developed a taste for music and joined in with the boys in the school’s music room. When the boys finished year 12 many of the Year 12 students rounded up some money and bought Trent his own guitar with their signatures. Matt is now a musician and Trent as been to gigs played a song with him. Trent has been successful since leaving school and at one time was working three jobs at once, there’s no stopping this boy.

    Oh! another thing, what a small world it is, we found out over the years that Trent’s father and Matt’s father migrated to Australia from England in 1963 on the same boat and their families lived at the same quarantine center.

    jj

  37. Rochelle Del Real Says:

    I didn’t know anyone who had a child with DS so when my friend called me after over a year with out contact (on her part) she told me and I did what you said not to do! I said,”I’m so sorry!” I don’t know how to fix it now. I text her to pick a day I can go and visit but I’m so scared of putting my foot in my mouth yet again!

    • katrinastonoff Says:

      No worries, Rochelle. You don’t have to fix anything.

      Definitely text your friend, and go visit. Hold the baby. Ooo and aaa over him/her (you’re SO going to fall in love!). Say congratulations. Ask if you can help (and try to give a specific example — do laundry? watch the baby so she can shower? grab some groceries or diapers? call around to find who has preemie size baby clothes? Whatever.

      Remember, i also said, “Mostly, your friend just needs to know you love her and that you will love the baby too. She needs to know you aren’t going to run away and hide.” You can totally do that!!

      *hugs*

  38. Anonymous Says:

    I’m in my 50th now,but when I was 23,I had a DS child,my first child…she did have a heart condition,she come home after birth but I knew she had to go back for heart surgery….after 2 heart surgery she passé on….was the sadist day of my life,and the happiest..how selfish and confused could I be….now days I suffer from serious depression…and always ask my self,why???

  39. Alice Says:

    Thanks for your blog. I grew up in a family of 12 children.
    My youngest brother had DS. He was a blessing. He is no longer with us but the other siblings and I are so thankful for having this loving brother. It has brought us a close-knit family and to this day, after 50 years, we still have family outings 2 to 3 times a years even though our families had grown over a 100 strong. I love your website.

    • katrinastonoff Says:

      Ah, thanks, Alice! I love hearing these kinds of comments. I used to wonder what my daughter’s life would be like, whether her brothers would feel burdened by her. But the older I get — and more importantly, the more siblings I meet — the more I realize what a non-issue it is.

      My husband and I are not alone in thinking she is a gift to our family.

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