Monday, August 26, 2013

Babywearing a baby with Down Syndrome

This post is the first in probably (hopefully!) a large number about how to continue doing attachment parenting/natural parenting/etc. when presented with the unique challenges of a child with Down syndrome. I hope it's helpful to you!

With my older son, I got ridiculously lucky and won a Baby Bjorn, a Moby Wrap AND a Boba carrier through online giveaways and a Twitter party. I didn't know anything about baby carriers and probably wouldn't have spent the money to try that gear out. Since I won it, I tried it. I was instantly hooked and now consider it both essential baby gear and definitely worth the money! We mostly used the Boba, our favorite of those three options, as it was comfortable, sturdy, and very toddler-worthy. I liked the BabyBjorn, but learned that narrow seated front packs don't provide adequate support for babies' hips, and that front-facing is actually not advised by most people who have looked in depth at the ergonomics of "babywearing" (using a baby carrier). My son was actually too old for the Moby wrap by the time I got it, so I never even used it with him. But with the Boba, I walked miles and miles with my adorable son strapped to my back or tummy! It was so great to get to hold my intense, high-needs baby AND be able to go anywhere or do just about anything. After this great experience, the only thing I asked my parents for as a new baby present for son #2 was an Ergo, as I've heard great things about the ease of nursing in them and liked that you can also do hip carries.

So I was devastated when I read online and had it confirmed by our physical therapist that our soft structured carriers-our Ergo and Boba-would not be appropriate for our son with Down syndrome. But I was determined to find a carrier that would work for our son. I believe babywearing is great for all babies, but especially for babies with Down syndrome. Being close to their mama (or daddy) in a carrier or wrap stabilizes or improves heart rate, growth, and breathing patterns and decreases the incidence of ear infections, reflux, and sleep apnea, all of which babies with Down syndrome are more prone to getting than typical children (This great article cites studies for each of those amazing claims!) And it allows parents freedom to keep their special needs babies close and still go anywhere and do just about anything. When you know the average predicted walking age for your child is 2 years old, a piece of gear that allows for increased mobility and freedom for you can be a godsend! To figure out what would work for our son, I talked to two friends who recently received their physical therapy degrees, plus our own physical therapists. I researched hip dysplasia and Down syndrome generally. You'll want to of course take your child's strengths and weaknesses and invidividual health concerns (and your own) into consideration when deciding what will work for you. For our son, here's what we came up with: 

 Key Concerns
  • Hip dysplasia
  • Babies and toddlers with Down syndrome are more prone to hip location than babies in general, so it's extra important to use a carrier that supports out to the knee, thereby spreading the baby's weight away from his or her hips.
    Inadequate support: 
Well supported:

  • Joint laxity
  • People with DS basically have extra stretchy joints. This leads to a tendency to splay their legs apart, and to avoid encouraging this, it's important to have a carrier that does not spread your baby's legs wider than is natural. Imagine if you were holding your baby, asleep, against your chest while you recline in a rocking chair, and you were absent-mindededly patting his back with one hand and had the other arm under his bottom. Your goal is basically to mimic that leg and hip position as closely as possible! Some physical therapists and websites may recommend keeping legs together, but I feel there is compelling evidence that forcing legs together actually increases the risk of hip dysplasia! A more neutral, natural position is preferable to either overly splayed or forced together.

    Forced together:
    Better position:

  • Neck instability & other delayed motor skills
  • Babies and toddlers with DS tend to take longer than typical babies to develop good neck strength. It's important to choose a carrier that provides adequate neck support until baby is able to hold his own head up well. You also have to be very careful about avoiding chin-to-chest position, so I personally don't feel comfortable with pouch slings or laying down positions to nurse in other types of carriers.

  • Sensory & communication issues
  • Babies with DS tend to have delayed communication skills, may not be as reactive to sensations like pain as typical babies, and can tire easily. Because of this you have to pay very close attention to positioning them well, as they may not fuss when uncomfortable as quickly, as loudly, or as long as a typical baby would. Our son did not cry until he was several months old except from shots and blood draws!

    What works
    • Stretchy wraps
    • A Moby Wrap, Boba Wrap or other stretchy wrap is an excellent choice for a newborn with Down syndrome. They are easy to use once you get the hang of them and are very easy to get baby in and out of. They are good until baby is about 15lbs or so. 
      A Baby K'tan is a great stretchy wrap hybrid carrier-no tying needed- that was actually created by the parents of a baby with Down syndrome!! It is tested as safe for babies up to 42lbs, but most reviews I've seen say it is most comfortable for babies under 15-20lbs like traditional stretchy wraps. 

  • Woven wraps
  • Woven wraps are my favorite carrying option for my baby with an extra chromosome! Some reputable brands include Oscha, Natibaby, Didymos, and many more. Stores like Marsupial Mama and Wrap Your Baby carry many wraps from some of the best brands, and you can buy used wraps from other moms on Facebook, often for less than retail (but sometimes much more, for hard to find patterns and unique handwoven wraps!)

  • Ring slings
  • Ring slings are often made by the same companies as woven wraps, but a few companies like Maya Wrap and Sakura Bloom specialize in just ring slings. They're a sturdy and pretty grab-and-go option that many people love. I personally don't own one, but my son's physical therapist specifically mentioned them as being great, and most people I've met who like woven wraps like ring slings too. I got to borrow one from our local babywearing lending library, and to me it feels slightly less secure but also much easier to get baby in and out of than a woven wrap.

  • The right soft-structured carrier or mai tei
  • A carrier like an Ergo or Boba or an Asian style mai tei can work if the baby is big enough that he is supported out to the knees but not spread out farther than he would be if you were holding him in your arms snuggled against your stomach and chest. For most kid+carrier combos, that will probably not be until toddler days at the earliest, but some custom carrier makers can craft one especially for you that will fit at any point! Additionally, the Ergo newborn insert actually alleviates the splaying problem for newborns and is what we used the first several months of my son's life!

    Babies and toddlers with Down syndrome present some extra challenges when carrier shopping. But in almost all cases you should be able to find a carrier that fits your lifestyle and your child's strengths and challenges, so you can snuggle your sweet baby almost whatever you do and wherever you go. 

    What type of carrier is your favorite for your child? 


    I'm not a medical professional or physical therapist, and I've never met your child. I hope this information helps you find a carrier that's right for you, but please consult your child's care team and use common sense and motherly intuition to adapt or ignore my suggestions to fit your child's needs!

    Graphics used with permission of the International Hip dysplasia Institute

    Some product links are Amazon affiliate links, which means your product doesn't cost any more to you, but I get a tiny cut of Amazon's profits!


    Momma Jorje said...

    Fantastic post! I learned some stuff here myself. We were lucky as far as muscle tone with Spencer. We use a Boba carrier and LOVE it! I keep one in the van now. Spencer started walking around 1½, but not enough to walk around while out & about yet. And he can be a little clingy, so I wear him A LOT!

    I loved our Moby wrap when he was a newborn. I did put his legs together between us and carried him in a fetal position. I had no idea that forcing their legs together could be just as bad!

    Crunchy Con Mommy said...

    Aren't Bobas awesome? We have okay muscle tone, but lots of splaying so I'm staying away from the SSCs for now. We did us it with our older son for long hikes even after his 3rd birthday, so it's definitely useful even once your baby can walk.

    The legs together thing there seems to be some disagreement on. Honestly I don't understand it. Either physical therapists haven't seen the evidence that forcing hips together causes hip dysplasia too, or they disagree with it I guess, because they all seem to recommend legs together but I can't find ANY evidence indicating that's a good idea, and I can find stuff that looks reliable to me indicating that its a bad one. Who knows!

    Amanda @ Erring on the Side of Love said...

    Great post! We use our Maya Sling the most because of the ease to get the littles in and out. I think my oldest lived in it close to the first 9 months or so. My youngest son seemed to prefer our moby but I feel it has a little too much stretch to it for his growing weight and we are now sporting the Maya moreso. Would love a woven wrap but need to save! Also use the Ergo when bigger. Hubby used this one and prefers it (ie he has not worn either of the other two lol). So nice to find your blog! Also, I LOVE your felt fruit in your blog picture. Did you make them?

    Crunchy Con Mommy said...

    Hey, glad you found your way here too!
    I've heard great things arp out Maya slings and they sure are pretty. There is a "Babywearing in a Budget" FB group full of carriers under $100 so that might be a good place to get a first wrap once you've saved up a bit! My husband is an SSC guy too. No interest in wrapping :(

    I sewed and embroidered the felt fruit for my niece as a Christmas present a couple years ago! I'm glad you like it!

    Crunchy Con Mommy said...

    Errr excuse my autocorrect. That should be "about" not "arp out" lol

    Tali said...

    This was a great post. My sister actually started a baby carrier company specifically so that she could use it with her son who had down syndrome. it's called baby k'tan. she wanted something like a wrap, but didn't want to have to wrap it. anyways, nice post!

    Crunchy Con Mommy said...

    How could I forget the K'tan?!?
    I've never tried it, but I love the Down syndrome connection. I'll add that to the post :)
    Thanks for stopping by and commenting!

    Stephanie R. said...

    I have a Pikkolo by Catbird Baby and its awesome! It's a SSC that has an option to adjust the crotch so you can find the perfect fit for a little one with DS. I feel really comfortable using my carrier with my little guy and make sure he isn't over extended because of this feature!

    Kat said...

    Great post! I'm glad you're taking the time to put this info out there for other moms. Thanks!

    Lena @ WhatMommyDoes said...

    Wow, this is such a good post! Very informative. While I don't have a child with DS, I am going to refer others to this post in the future. I didn't know the part about stretchy joints - very interesting! #SITSBlogging

    Angela Bonzani said...

    Confused..... Is an ergo a soft structured carrier? And is it on the no no list? Looking at getting an ergo have a Moby but am tired of all the wrapping!

    Crunchy Con Mommy said...

    Yes, an ergo is considered a soft structured carrier. For us it definitely cause my hips to splay more widely than we were comfortable with.
    If you're interested in a ssc, I'd recommend one with an adjustable panel, like a catbird pikkolo and/or borrowing one or more from a local babywearing group and trying it out and taking it to a physical therapy session to see what your pt thinks of the hip positioning.

    Crunchy Con Mommy said...

    My son's hips, not mine haha. Somehow left a word out there...

    Crunchy Con Mommy said...
    This comment has been removed by the author.
    Anonymous said...

    With many of the soft structured carriers, you can cinch the bottom with a hair tie or ribbon to prevent it from causing the legs to be too far splayed out. it's a good transitional hack when LO is too big for the infant insert but legs are still a bit too short for the carrier.

    Angela Mui said...

    Hi there - I'm trying to decide which baby carrier to buy. My son has DS & is 4 months. I would like my husband to use it for when we are out walking so think the SSC best.
    Looked at the ergo & the boba -
    both look good
    any recommendations?

    Crunchy Con Mommy said...

    Hi! For me, Boba has a much better fit (I'm short and curvy), but I'd probably recommend a carrier like the catbird pikkolo and I'd also recommend bringing it to a meeting with your physical therapist before washing and taking off tags and such in case even adjusted it is causing too much leg splaying for your son. I hope that works for you though!

    Crunchy Con Mommy said...

    Oops wish there was an edit function. I meant to add that the reason I'd recommend the pikkolo is that it has an adjustable base so you can make it more narrow to hopefully avoid leg splaying. An infant kinderpack might also work, and then you could size up to the regular KP once your son is a little bigger.

    Have fun shopping!

    Angela Mui said...

    Thanks for your help. Going to order the boba & take it to our pt appointment. We don't have as much in shops here in uk for me to try them on. The pikkolo looked complicated for back carrying. To be honest we won't be using it every day so I don't think we need to worry to much about the splay. I also fancied having the option to carry if we out walking when he's older & gets tired.

    Elizabeth J. Neal said...

    I liked the BabyBjorn, but learned that narrow seated front packs don't provide adequate support for babies' hips, and that front-facing is actually not advised by most people who have looked in depth at the ergonomics of "babywearing" (using a baby carrier).

    Piggyback Rider said...

    Boba child carrier is convenient for infants. It also creates mutually enjoyable with mom and baby. For toddlers 2.5 y/o + up to
    60lbs, try Piggyback Rider standing child carrier and you'll sure enjoy your adventure. :)

    Grateful for Grace said...

    We are adopting a baby girl due in August who has DS. I have dreamed of a Tula for years. Bought one a month ago, then learned of her diagnosis.

    I am researching how I can make a Tula work. I don't want to use a wrap or stretchy wrap. Sigh.

    I have heard that I can use the infant insert for awhile and that's fine for her hips, but then I need to bolster her until toddler age. How do I do that? Want to do another post on that? For us mamas who really want to make a SSC work. :)


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    Anonymous said...

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    Anonymous said...

    My son has down syndrome. We used a baby Bjorn, over the shoulder baby holder (ring sling), a Moby wrap and a little frog woven wrap. Of all my favorite for my child is the little frog woven wrap in the front Joey position up to 14 months. I used the ring sling in the upright front position for the first few months. He had no problems with any of these. However, I just feel the little frog woven wrap is sturdy and gave him the best all around support and keeps his legs in a non forced position. Just my 2 cents. Cheers!

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