6 Tips for Holding and Positioning an Infant with Down Syndrome

[This post is a part of the “New Parent Guide To Down Syndrome” blog series. Be sure to check out the other posts!]

“Watch their head” has a whole new meaning when handling most infants with Down syndrome.

down syndrome spread eagle hypotonia baby

Noah showing off his spread eagle

You may have noticed that your child with Down syndrome feels a bit different in your arms than a typical child. Hypotonia effects every muscle from the neck, abs, and even the mouth. It is not necessarily muscle weakness but a decrease in tone.

Tone involves tension or resistance held in a muscle at rest. This makes your child feel floppy. There are various ways to look for hypotonia. When holding the child under their armpits they will practically slip through your fingers.

Also when holding them in the palm of your hand they will lay like a wet noodle. You can pull up on their arms and look for head lag, and with hypotonia the baby will not be able to bring their head off the ground.

Simply watching them in their bassist can also give you a hint as they will lay spread eagle with arms and legs outstretched just like Noah is below.

6 Tips On How To Hold An Infant With Down Syndrome

I have handled a lot of infants in my training and hypotonia makes it a bit difficult. However it also makes for one snuggly baby. I can’t get enough of Noah cuddles. As you start your adventure with Down syndrome you will start to do several exercises to help battle hypotonia. You will hear a lot about midline, meaning that your baby can bring their arms and legs to the middle. Here are some tips we learned on handling your baby as well as positions you can use.

1. Swaddling

swaddled baby

Snug as a bug

Swaddling your baby (like the above picture) will help them keep arms and legs midline (and sleep well). If you don’t know how to swaddle watch this awesome video by our friends over at The Fun House. You can use a large receiving blanket, or buy the handy SwaddleMe Blanket like the one we are using on Noah in the picture above. I recommend the velcro ones because as your child get older and starts to try to escape you can get them super tight and the become baby straight jackets. Noah couldn’t figure out how to escape which meant that he and mommy slept longer. (And what mommy doesn’t enjoy a little extra sleep.)  🙂

2. Provide extra support to the baby’s head

Provide extra support to the head and remind people who hold your baby to do the same. I know that people always say this with a newborn, but it is even more true with a child with hypotonia due to the head lag that we talked about earlier.

_DSC7261

My mommy is holding me just right

3. Watch those armpits!

When holding the baby up, try to avoid holding underneath the armpits as the child will slip through and you will put extra stress on those joints. Hold around the rib cage just beneath the armpits where you can get a firm grasp (as pictured above). You also want to creep your fingers up to the back of the neck to offer head support.

4. Pay attention to the limbs.

Make sure you do not get their arms or legs caught in odd positions, as it is easy to overstretch their joints. Just be aware of where their limbs are as they can end up in some odd places without you noticing.

5. Sideline is your child’s friend.

Laying your child in a side lying position will help them bring their hands and legs midline and can help them play with toys and interact more with their environment

side lying position

Hey Mom, I can actually bring my hands to my mouth

6. Tummy time, tummy time, tummy time!

The most important position your child should work on is tummy time. You want to do this as often as possible. They can lay flat on their belly or you can use a pillow (like a Boppy Pillow) to prop them up a bit.  This position will help them build head control which is needed before moving on to the next developmental steps.

tummy time

What’s next? I got this head control thing down.

I hope these tips help you learn to hold and support your new infant with Down syndrome. Please be sure to leave a comment with any questions, and I’d be happy to try to jump in and answer them.

What challenges did you have when learning how to hold your new baby with Down syndrome. If you have other children in what ways did you find holding and supporting your child with Down syndrome different than with your children? Leave a comment and tell us about it, we’d love to hear your feedback.

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Comments

  1. This was very helpful.. My baby was born with DS in May AlexZander. It was hard to accept at first but now he is the best thing that could have happened to me!! I love him so much! Thanks for all the info..

  2. Melissa Bible says:

    Passing Karis has been SO much more difficult than her three older sisters! My husband and I felt a bit like “newbie” parents when we first started passing Karis back and forth between us because of her hypertonia! It really helped to have her swaddled well. Now that she’s 4 months old the biggest difference I notice is while giving her a bath! So far I’m not brave enough to do it without my husband’s help, just because she’s so slippery! (Loving your site by the way!)

    • Oh man…I know just what you mean. Noah has liked to take baths for as long as I can remember and I used to be so scared when taking one with him. He’s gotten a lot stronger now, but I still hold on to him pretty tightly and he’s 19 month old.

      As you can see he really enjoys a good bath! 🙂 http://noahsdad.com/baths/

      • Melissa Bible says:

        Yes, sooo thankful Karis actually LIKES baths at this age…. her sisters did a lot of squirming so I can only imagine how hard it might be if she didn’t like them! Thankfully we’ve got a system figured out that works well now! I tell ya, that first bath at home! eeekss!!!

    • Baths are terrifying!!! Wait until they are moving around in there trying to stand up. I have learned to put only a little bit of water in there 😉

  3. This is a great post not only for kids with DS but is very revelvant to kids who have all sorts of muscle issues. Your pictures remind me of Coop when he was smaller and having to support most of his movement so he could get the best vantage point! It took me ages to work out how to hold my two neurotypical kids after fluctuating tone seemed the norm to me! I still have moments where i cuddle my able bodied daughter and pop her on the floor and she walks away and i think its a miracle!

  4. good post!

    • Thanks, I’m glad you enjoyed. Do you have any children? If so how what are there ages? 🙂

      • We have six (seven really, one is just inside still 😉 ) ranging from 12 yrs down to 11 months. My sixth (the 11month old) has Down Syndrome and there have been several things I’ve found on your blog that I wish I’d known when she was first born (this is one of those posts). Its a great resource!

        • Wow….you guys have a full house! I bet you guys have a lot of fun.

          Thanks for the kind words about our site. We’re glad we can be a resource. When is your new baby due?

  5. Gramma Jackie says:

    We are the PROUD Grandparents of 28 grandchildren and 16 great ones, too. Our 16th Great grandson was recently born on June 4th, 2012. Preston has Downs and we LOVE him sooo much. He is a very snuggly baby and so good, too. Never really fusses much. Your 6 tips of how to hold a ds child was so very informational to me. Instincts told me I needed to hold him differently than most of our other little ones, These tips have really opened my eyes as to how to better hold him. Your site on here and the tips were soooo helpful to me and I will be passing this info on to his Mommy and grandparents, also. PLEASE keep the tips and info coming, I

    am sure it will help all of us to be a better parent/grandparent/ greatgrandparent, too:):) GOD BLESS YOU AND YOUR FAMILY!!

    • Do you guys have family reunions as I bet those are fun 🙂 thanks for the support. Noah got to meet his great grandma back in Dec. It was very special. I think it is pretty awesome that you are the one on the Internet finding information 🙂

  6. Great Post! Working on all these with PT already and its amazing how fast little Ava is moving along. 10 weeks old tomorrrow! To think I was upset and kind of depressed 10 weeks ago blows my mind. This little girl is rolling from back to front, picking her head up, tracking with her eyes and head. So excited for the future. It’s tips like these that help make them happen!
    Best,
    James

    • Any new parents from Connecticut on this blog?

      • Not sure if you had a chance to ask on our Facebook page, but you may want to ask there as well. It’d be awesome if you were able to connect with some people from Connecticut through this community.

    • How is she already 10 weeks??? I am glad she is rocking it in therapy 🙂

      • 5/30….seems like light years ago! PT is great. Connecticut has a great program (Birth to three). We had the home birth ended up in the hospital 7 days after birth were there for 8 days, and week after we came home we had our evaluation and two days later our first PT appointment. Obviously its all minor stuff now turning the head working on rolling over ect ect, but its exciting to see her doing this all on her own now. Our Pedi was pretty impressed at the two month check up. Besides PT we have also started cranial sacral, pedi chiro(sister n law is a chiro), supplementing with glyconutrients, and a laundry list of things. Such an amazing experience thus far. The stressful days are there, but it truly is amazing to see the progress. Don’t get me wrong its a ton of work, but aren’t all kids a ton of work! As I type this she is smiling and giving me a litttle cooooo!! I will try to post a photo to the FB tonight! Speak to you all soon! Still trying to track down some new Connecticut parents of a child born with DS anyone reading NoahsDad blog please let me know!!! Talk to you soon!

  7. Great post! Our 6 mo old son has Down Syndrome and while he has better head control now, we still have to warn people who hold him to watch for his arms! I’m constantly spreading the word about your blog to our friends and family because it really is a wealth of resources. I get a lot of, “Is he going to be okay?” and being able to show them your family helps me show them that our lives will get back to normal (our new normal). Thank you so much for sharing your experiences. I started following immediately after Liam’s diagnosis (we found out the day after he was born) and seeing your Noah has given me so much comfort.

    • I am so glad we have been an encouragement!! That is one of our main goals with this is to show new parents what life will sort of be like for them. We know every story is different but it is nice to see a glimpse. Thanks for the kind words

  8. My husband and I love snuggling our little! He is so so cuddly! I am very apprehensive about him going to daycare next week. He is now 3 months old, and much stronger, but I worry others won’t hold him as gently as we do. This is a great resource, that I hope to be able to print and share with his daytime caregivers. Do you have any other suggestions they would find beneficial? The things we have been doing have become second nature, that I take for granted that others may not know to do them.

    • I think another big area is how you feed your child. We had to tell our care taker to feed Noah in his car seat as it provided the most support and he ate better. If you have tricks for feeding those are helpful to share. Also what works to calm them down when they are crying. Noah couldn’t keep a pacifier in so we usually either held one in, or used the one with an animal attached. A child with Down syndrome can be “easy” to take care of as the majority are not fussy need attention type children…however they do need attention and activity. I would tell them to do tummy time a few times a day and if you are in therapy share the tips you are learning so they can work on some things. I am sure they will fall in love with your child 🙂

      • Thank you for sharing these ideas! I was armed and dangerous tonight at Open House with special instructions for my Baker Boy! I am terrified to leave him, as staying home playing and loving on him all day has become our norm, but feel more confident having shared my expectations. They were eager to learn and very receptive to our wishes. It’s safe to say our little fella has already captured their heart. He’s such a joy!

    • Jennifer, it looks like Noah is going to be staring school, or child care soon also. Oh man, I totally think I”m going to loose it! There’s a good chance I’ll cry WAY more than he will when he drop him off for the first time…and the 2nd, 3rd, 4th, 5th……. 🙂

      Like my wife said feeding in the car seat worked out well for Noah considering his low tone, but in all honestly other than him having a hard time drinking from a bottle in the beginning everything else was pretty “easy.” Perhaps some other parents can chime in as well.

      Are you guys using one of the big daycares in your areas? How did you find the one you’re using, word of mouth? I ask because it looks like we will be in the process of looking for a good day care soon, and can use all the suggestions we can get. 🙂

      • Rick, I’m terrified! I’ve cried all week; I’m a blubbering mess! I have totally been the mother in Love You Forever, who creeps down the hall (or in our case, across the room), “and if he’s really asleep, picks him up and rocks him back and forth, back and forth” just for a few extra minutes with my boy.

        We chose our daycare when I was about halfway through my pregnancy. My husband and I toured several facilities, and solicited recommendations from friends. As a Christian, teacher, and mommy-to-be, I had some non-negotiables. I wanted a church-based preschool where our son would learn scripture, be introduced to letters, sounds, colors, etc., have the opportunity to interact with other children, and to be loved and encouraged by his teachers and peers on a daily basis. After learning there was a chance Baker would be born with DS, I was even more confident in our choice. This facility has a great relationship with Early Intervention, and is well trained on mainstreaming students with special needs. As much as I will miss staying home with him, I am excited about seeing Baker thrive in this environment.

        I will be praying for your family as you make decisions regarding childcare for Noah! I know God is already preparing the perfect place for him to learn and grow alongside other children.

  9. You have posted this at just the right time for me. I’m having my son in 3 days and will forward this out to my family and friends. Thanks for sparing me from having repeat myself, who knows how many times. In about six months can you do one of these quick tips for how to properly spoon feed a baby with low tone in the mouth? Haha

  10. Thanks for your suggestions, our child Pietro is 3 months and he actually moves a lot without control. Just a little question do you use the swaddling also for sleeping? I think it might be a bit too hot in this period. and till what age?
    thank
    Paola

    • I swaddled during sleep as Noah would startle himself awake. He has always been a mover. He started breaking free and sleeping fine at about 4-5 months. I think if you are using cotton and not fleece they should not get too hot.

  11. Awesome info that I’ll pass on to friends. I forget sometimes how different it feels to others we’ve just got so use to holding him so he doesn’t ‘slip’ through our fingers! Your’re darn right about the cuddles, I call Elias my Snuddle Bug! (Cuddle+Snuggle)

  12. This is helpful info. We have a six week old named Ethan and there are some things on your post that I have noticed in Ethan that I didn’t realized had to do with his hypotonia. I haven’t been around a lot of typcial or ds newborns to notice.

  13. What a great list. I’m an occupational therapist and really enjoy working with little ones with low tone (like kiddos with Down’s Syndrome) because of all the great progress that they can make with a supportive team and lots of hard work. I’ve discovered some great tips for tummy time in the course of my time as an OT and they seem to be especially helpful for low tone babies: http://mamaot.com/2012/03/25/tips-for-making-tummy-time-a-little-less-um-miserable/. Hope it helps. Love your site!

    • Thanks so much for the kind words, and for sharing your post. How long have you been an OT? And how did you find our site? We also enjoy learning how people found us. 🙂

  14. These are all good positions, but there’s one missing.
    When feeding a baby with DS, it’s important to keep the ears above the mouth. Speech Pathologist Sara Rosenfeld-Johnson (www.talktools.com) has an excellent article on her site about the Oral-Motor Myths of Down syndrome. She contends that if you just feed a baby sitting up, so his ears are above his mouth, you will prevent some of the “givens” of oral motor complications in the syndrome.

    If you sit a baby up, you will encourage a more adult tongue movement. This will help the tongue to push out the top teeth and expand the palate naturally. It will also help develop a better swallow. And it will keep milk and formula from backing up into the ears.

    My orthodontist (who has his work cut out for him because I did not find this article until my daughter was way beyond bottles) confirmed that it would make a lot of sense to do that.

    You can download the article for free at http://www.talktools.com.

    — Deb’s Mom on Guam

  15. Sharon Shalawylo says:

    Wow, great information . We are expecting our eighth grandchild in mid July. Diagnosed with Down Syndrome at mommys 3 month check up. The whole family is anxiously awaiting our his arrival. We are reading and learning as much as we can so we can give him the best head start we can! I feel more excited the ever. I will stay connected with your post for some time I’m sure!

    • Congrats! Please keep us posted on everything. By the way, be sure to check our Facebook as well; lots of great families on there. (www.facebook.com/noahsdadcom)

  16. Is it possible that my son with ds doesn’t have low muscle tone? He’s not floppy and pretty typical from what I remember if our older son.. The docs all comment on how how strong he is. He’s told belly to back At 5 weeks and back go belly at 10 weeks.. He’s 3 months now and practically crawling already.. Bringing his hands midline is not a challenge for him… He does all this stuff without help And I’m a bit confused because of all I’ve read saying kids with ds will struggle with these things…

  17. Jaclyn T says:

    At what age do you start tummy time?

  18. Amber Glavin says:

    thank you for this post! I might be reading a bit early…but I think any knowledge helps! I found this blog post through pinterest! My husband and I have a 16 month old little boy at home and just delivered our little Layla girl on 5/27/15 and found out that she had DS after being told it was ruled out. So we have been surprised and just started holding her for longer periods of time and trying to feed her. I’ve already noticed some of the things you mentioned above and will start informing family. Layla does like to cuddle! Love that and love her!! Once again thank you! I will definitely be checking back for more posts. Very helpful!

  19. hi,
    my daughter is 2.5 months old and she was diagnosed with CHD. ASD and large VSD. she is puttting on her weight very slowly. still she is 3 kg. (2.5kg when she was born)
    there were some feeding and poop issues which are now better. i m worried about her head control. because she look side ways and tries to bang her head backwards. but still she do not keep head still for some secs. is it okay? shall i ve to wait a bit more? or give her oil masaage or something?
    i m from pakistan and i vent able to confirm her syndrome by testing but every doc say so because of her slanting eyes.there are no supportive programs in our country. your site is very supportive and i feel that it is going to b okay by the grace of GOD.

  20. vaibhav singh says:

    My Baby girl have down syndrome she is 7 month old but not hold her neck. so pls tell me some thearephy for holding her neck. i am gfrom india

    Plz help me

  21. Samantha Stewart says:

    How soon can I do tummy time with my little girl, she is 7 weeks old tomorrow. She hold her head up but not for very long, any tips would be really appreciated. She is really strong but anything I can do to help her build muscle tone would be great.
    Thank you in advance

    Sam

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