Gillian Marchenko

March Home Staging, Jooniper Design, Author & Speaker

10 things TO SAY when a baby is born with Down syndrome

10 things to say when a baby is born with Down syndrome

Here it is, day 31 of blogging for Down syndrome awareness the month of October. Phew. I’m tired!

A few weeks ago I posted 10 things not to say to a parent of a child with Down syndrome.

Someone emailed me a day or two later.

“My father and I were talking about your post about 10 things not to say to a parent of a child with Down syndrome, and we were wondering … What should we say?  … Please, help us. We really want to know.”

I was touched by this person’s desire to learn about such a delicate subject.

I’ve given this some thought. I know every parent is different, so not all of these on my list will resonate with everyone.

Here’s my list of 10 things to say to when a baby is born with Down syndrome

10. How are you doing?

After my daughter Polly’s birth and diagnosis of Down syndrome, I appreciated friends and family asking how I was doing. I realize not everyone would want to talk about their feelings but it meant a lot to me when people reached out and “went there.”

9. He/she has your eyes/nose/hair etc…

One of the things I worried about after Polly’s birth was that she wouldn’t look like the rest of our family. Of course, she does. Sure, it’s noticeable that Polly has Down syndrome. Her eyes are almond shaped. Her nose is a bit flat. But she also has blonde hair like her sisters. She has my smile.

At first, I just wanted to know that although she had Down syndrome, she was my baby.

8. How’s her health?

Most people are aware that an extra chromosome on the 21st pair brings with it added medical concerns. I was fine when people asked about Polly’s health. It provided common ground, something to talk about during awkward pauses. And of course, friends and family asked so that they could pray for her health.

7. You are going to be a great parent.

I needed to hear these words. I was afraid. Down syndrome was new. I would have loved the reassurance.

6. We brought the baby a present.

Our daughter was sick right after her birth for three weeks. We went from having a baby to having a sick child. Polly didn’t get gifts, and we didn’t get cards with hearty congratulations on the birth of our child.

Hear me, you guys. If you are going to see a family after their baby is born with Down syndrome, bring a cute outfit, or balloons, or a stuffed animal.

In other words, celebrate new life.

5. I am bringing you a meal Tuesday at six o’clock.

Offer practical help. And don’t say, “what can I do?” or “let me know if I can help.” Parents are too out of it to ask. Just tell them you are bringing a meal. And be specific. Give the day and the time. The parent will check it off her list. Being concrete will put her mind at ease.

4. Can I hold him/her?

Pay attention to the new baby. Hold him. Cuddle him. Love on him. Pray for him. Your tangible, bodily acceptance will have a great, positive effect on the family.

3. We’d like to take the other kids out to a movie Saturday and then have them over for pizza.

Once again, tangible help. If there are other children in the family, chances are they are getting lost in the shuffle. Schedule a time to take the kids out to do something fun. Again, tell the parents when, where, and for how long.

Another tip: take them for a full afternoon or for the day. Parents need time together and with the baby, and they need to know their other kids are attended to.

2. You make beautiful children.

I always say this to a new parent and I always get a huge smile in return. Parents crave assurance that they did well, because trust me, in the beginning they aren’t sure when Down syndrome is in the picture. Compliment the baby. Fuss over her. And compliment the parents on a job well done.

1. Congratulations on the birth of your baby!

I don’t recall getting congratulated. Those first days are squiggly in my mind, but oh how I’d love a story to pop up of someone embracing me and congratulating me on this new little life that with God’s help, I produced.

Make a big deal over the baby. It’s a baby! And she/he and the parents deserve all the love, attention, and excitement that comes with new life.

Parents, what would you add?

Did you like this? Share it:

42 comments found

  2. I would say that for my daughter who recently had a beautiful baby girl that also happens to have Down Syndrome she would personally probably cross off number 4….atleast in the beginning. She was very anxious about anyone holding, even being around the baby at first , especially when she was in the NICU. She is still a bit nervous about her getting sick , and as both a Mom to a medically fragile child whom I do worry a bit more about and grandma to two new grandbabies with flu and cold season starting up, people need to make sure they and there kids are healthy before asking to hold baby or even dropping by. Overall though I think your list is good!

    Reply

    2. We just had the younger kids put on surgical masks (which we provided) after liberally using disinfectant! Calmed us worried parents down and let our child be loved by more than just mom and dad! 🙂

      Reply

    3. Just because in some cases would be no doesn’t mean that number 4 should be omitted. Our daughter was in the NICU for 18 days home a week the. The PICU for another week. We wouldn’t let anyone near her. But having people ask if they could hold her let us know that they were not afraid of her or that she was any less than any other new baby.

      Reply

  3. As I recall, you also appreciated when Jim called your baby by name…seems like he might have been the first medical person to do so…(correct me if I’m remembering incorrectly…)

    Reply

  4. How about “When can I babysit?” Mama might not be ready to let her newborn out of her sight yet, but she could take a raincheck. And it’d be another way to offer your acceptance and support.

    Reply

  6. I love this!!! The list could really be summed up by saying “treat them like they just had a normal baby”. The friends that did that for us (especially the bringing gifts part) were the ones that I will always remember!!!

    Reply

  7. I’m so glad you wrote this post. I, too, want to be supportive, but it is hard to know what things are helpful to do and say when you haven’t been in that exact scenario yourself. Thank you!

    Reply

  8. Thanks for these reminders. Sometimes we act so dumb. We just really need to treat the family and baby like we would any other birth.

    Reply

  9. Thank you for sharing. I’d say that #5 could apply to any stressful situation a family may be facing, and I wish more people realized this. If you say only, “Let me know if you need anything” you will never hear from the family in need. We are not up to the risk of imposing on others. I would add that it does not have to be a meal. Say, “I am coming over at ten to clean your kitchen for you!” Get creative and don’t give up trying to help. 🙂

    Reply

  10. Gillian, This and and “10 things not to say are excellent. I am a NICU nurse and your lists include the same things I have been sharing for the last 17 years. We were blessed to have a beautiful daughter who has Down Syndrome in 1995. I love to talk to new parents because I can relate to most of their feelings. Thank you.

    Reply

  11. Hi
    My daughter is now 3yrs old, we found out she had Down Syndrome 2 days after her birth, although we were told during my pegnancy there was a chance she could have ds, so before it was confirmed i would sit and look at her for hours trying to see if there was any tell-tale signs that would indicate she had ds, probably trying to prepare myself but i honestly couldn’t tell to me she was this perfect little bundle of joy, once it was confirmed she remained this perfect bundle of joy, and so i refused to tell anyone or let my partner tell anyone of the results this worried my partner at 1st, i kept this secret for the first 10 days after she came home NOT because i was ashamed or embarassed simply because i wanted everyone to have the same untainted 1st impression i had, to see her for what she was ‘a perfect little bundle of joy’ after everyone had seen her for the 1st time i was more than happy to tell them she has Down Syndrome. For me it was important to show everyone
    YES she has Down Syndrome but that does not make her any less perfect to any other new born baby.

    so i agree with Jane people should look beyond any condition a child may have cause there is so much more to see

    Reply

  12. I have twins who were born 5 weeks early, so I understand that concern about illness when babies are young and the risk with illness at infancy. More importantly, God has brought special ones with DS into my life via my aunt and a friend. Over the years I have developed a passionate heart for these kids. It also helps my second oldest has Aspergers. What I love to do when I see these special, great kids out in public places I love to go up to the parents and tell them they have a very special son or daughter. They have been blessed. Then I like to talk to their child and I even give them a high five. I especially love the smile I get back in return from them when I do this! They are awesome, tender hearted, compassionate, sweet, kind loving kids. They have such a warmth about them that warms your heart. They are the most compassionate people I know.

    Reply

  13. When our daughter with Ds was born (July 2008), we sent an email after about 24 hours, announcing her birth AND her diagnosis, which was unknown to us until she arrived. This was a VERY difficult email to write but my husband and I pulled ourselves together to do it. Well… I received a flood of incredible responses, and about 6 weeks after she was born, I printed every single one and put them in a binder. I still read it from time to time. There are many good people in this world who know what to say. And for the rest, your article is super! Thanks for writing it.

    Reply
  15. Pingback: In My Arms, the privilege of holding my daughter with Down syndrome | Gillian Marchenko

  16. I know this is way beyond what is socially acceptable to say, but I always say, from the bottom of my heart, “thank you for giving birth to this precious baby. The genocide of downs syndrome children breaks my heart. I am so glad your gorgeous baby is in the world!”

    Reply
  17. Pingback: 5 things to do/not do after you receive a special needs diagnosis - ... | Gillian Marchenko
  18. Pingback: Top Down syndrome posts - Gillian Marchenko | Gillian Marchenko

  19. When we were blessed with our fifth child ( who was born with DS), the most memorable support was :
    1. The prayers people TOLD us they were saying on her behalf ( she almost died an hour after birth)
    2. Once she was stable , after some big miracles, the time people spent coming to the NICU with snacks, taking care of our other 4 kids, and then once home coming to see her with gifts and making a big deal about how she looked like our family and what a gift was was
    I love your list! It is all so true!!

    Reply

  20. I am impressed with your list as so many of us never know what to say or do and your information is a great help Thanks

    Reply

  21. Tell them how much this baby will open their heart and their minds and teach them to love like they have never loved before. Assure them that you know how much they love their kids but this one will amaze them! Tell them how their baby will make them prouder than they ever thought they could be and how they will find more love and support through their family, friends, and church than they could ever imagine

    Reply

  22. I think you did a great job with your list! I guess as a parent of a boy with DS I didn’t know how others would respond and just wanted to know everything would be ok – though it felt like my world was spinning. I think I wanted someone to hug me (and let me cry if I needed to)! I wanted to know that there would be people who could help me know how to best look after my boy. I wanted to know that it was ok to feel mixed up. I wanted people to listen, to be kind but not to avoid talking about the “obvious” either…. to admit, they didn’t know much about DS but that there might be other Mums who might that could help. I think I wanted people around me because I was quite depressed/unsure of myself emotionally (was overseas away from family) but actually really needed support. I was helped tremendously by friends sharing my faith who encouraged me!

    Reply

  23. Here’s one: “We’re coming over to do your laundry.” Something as simple as laundry (my most hated chore) can quickly pile up with a new baby, let alone one with special needs. This one simple gesture brings instant relief and provides unending gratitude.

    Reply
  24. Pingback: 5 things to do after someone you love receives a special needs diagnosis

  25. I will never forget it. Years ago I remember waiting for a friend in front of a grocery store. a young little girl, about eight or so, had wandered a few steps ahead of her mother who was still insider the store. The mom yelled ahead to her to wait. As she stood waiting for her mother the girl caught my attention and smiled so freely to me, then with me- (in a way only a syndrome child can do), unafraid of a friendly stranger. I recognized how beautiful she was-, what a sincere and big smile she so freely offered to the world. And as her mother exited, i started to tell her, “oh you have such a beautiful little girl!” but hesitated for a moment when I suddenly recognized that the girl had down syndrome. Then, upon realizing that this was of absolutely no consequence, said it with a big smile (which I hope conveyed my sincerity and none of my temporary hesitation.) Well, the mother gave me such a heartfelt, almost teary-eyed, “Thank you,” that i thought perhaps no stranger had ever said such a thing to her.
    Well, I never hesitate now. When I see beauty, and want to express my gratitude, I confidently speak up.

    Reply
  26. Pingback: I know I’m not the only one | day 10 | 3-2-1 The Adventure Continues

Leave me a comment! I'd love to hear from you!

This site uses Akismet to reduce spam. Learn how your comment data is processed.