Don’t believe the myth that babies with Down Syndrome can’t breastfeed. That’s just not true. In my experience, however, there are some points that are often overlooked.
The first few days aren’t predictive of the long haul
In the first few days, breastfeeding babies with Down Syndrome are often just like any other babies. Sometimes they latch fairly soon after birth, but often, they don’t. There are any number of factors that can affect a baby’s willingness or ability to latch on.
Like other newborns, one of the best strategies to help them latch is early and sustained skin-to-skin contact. I cannot overemphasize how this can be a game-changer for all babies.
Positioning helps improve milk transfer
Again, like any other newborn, these special babies do better in some positions than in others. But in this case, we can often predict positions that will work better for breastfeeding babies with Down Syndrome. Here’s a phrase I learned from a highly-experienced occupational therapist:
Proximal stability to achieve distal mobility.
In lay terms, that roughly translates to: use a position that stabilizes the baby’s core.
Breastfeeding babies with Down Syndrome are typically very hypotonic. That is, they have low muscle tone. That means that the side-lying position won’t work well — if at all. A cradle position might work, but maybe not.
A cross-cradle (cross-chest, transitional) hold or a football (clutch) hold works better. My favorite suggestion is a straddle position, although in the early days, that may be awkward.
Special babies have special needs
We’ve all chanted Derrick Jelliffe’s famous mantra from the 1970s: Breast is best! What we often miss is that the “best” is even more important for babies with special needs. Babies with Down Syndrome are likely to have:
- lower immunity than other babies, hence they need the special protection offered only through human milk.
- sensory overload, hence the familiarity of their mother’s warm skin and rhythmic heartbeat can be soothing.
- difficulty swallowing, because of their hypotonia. During swallowing, if they accidentally get a little milk into their respiratory tract, it’s less likely to be harmful. (Human milk is physiologic whereas artificial milk is not.)
- cardiac anomaly. That means that they become easily exhausted. Contrary to common belief, infants who have cardiac or respiratory problems do not “work harder” to breastfeed than to bottle-feed. Several studies in highly-respected journals have shown that it is easier when they breastfeed, and they have better blood oxygen levels compared to those who bottle-feed.
Standard growth charts aren’t very helpful
We have standard growth charts that reflect how breastfed babies should grow. (And how breastfed babies grow is NOT how formula-fed babies grow!)
We also have growth charts for infants and children with Down Syndrome. However, whether those charts were based on breastfed infants is unclear.
We do know that those with Down syndrome typically have lower birth weights. Thereafter, they grow more slowly than children without Down Syndrome. Hence weight gain and overall growth, while an important indicator, is only one data point in determining the nutritional adequacy for these babies.
Time and patience
In our podcast interview, Doris Stevick tells a wonderful story about her breastfed baby with Down Syndrome. The baby latched on shortly after birth, transferred milk, and nursed well thereafter. The baby did not require any supplements, and the mother had little or no professional help with feeding.
For others, that may not be the case.
Is it possible — do these infants have the capability to successfully breastfeed? A resounding YES! Do they have some deficits and delays? Yes. For some, it may take a month or more to breastfeed well enough to transfer adequate milk. But they can do it.
Whether you are the mother of an infant with Down Syndrome or you know someone who is, reflect on how important breastfeeding is for the baby. Then, remember that for breastfeeding babies with Down Syndrome, success is a matter of time and patience, and perhaps consistent and knowledgeable support.
If you’re the parent of a child with Down Syndrome that breastfed, what tips do you have for new moms? I’d love to hear your thoughts below!
I have a 2.5 year old with Down syndrome who was fed pumped milk for 12 months. We struggled with so many things – to begin with, he required oxygen support and had a disorganized latch/suck. He could latch, but could not stay awake to eat. Same with bottles. He would spend forever drinking 2ml. I then struggled with MASSIVE oversupply (around a gallon a day) that caused plug after plug and many many episodes of mastitis, which had to be treated with antibiotics 5 times. I was constantly in pain and even after toe revision and getting a better latch, we simply couldnt find a balance between nursing, pumping, and bottle feeding that worked. Any time I tried pumping a tiny bit less, I would get mastitis. It just didn’t work.
Over time my supply did decrease but it still was over twice what he ate (I pumped 60-70 ounces a day for many months) The same issues continued no matter what I did. I could only sleep on my back because ANY pressure on my breast tissue causes plugs. I couldn’t wear my seat belt properly. I couldn’t let him sleep on my chest or wear him.
I basically gave up on actually breastfeeding. We couldn’t ever make it work, so I stopped even trying after 6 or so months and just pumped.
At 12 months old he got really sick with a respiratory virus. He refused to drink anything and had to be placed in IV fluids in the hospital for 5 days.
After discharge, he continued to refuse all liquids in every form and from every cup/bottle/spoon/contraption I could think of. Out of desperation, I laid down next to him and offered my breast. He latched immediately and never looked back.
Miraculously, he still retained the rooting and latch reflex that most children would have lost by that age (and so long not latching). He retained other reflexes as well, and I believe that actually he was able to begin nursing so late because he has Down Syndrome.
He continued to nurse for over a year, all day and night, until I lost my supply due to pregnancy. After an incredibly difficult year, it was such a blessing to be able to spend another year nursing at the breast. Once he started nursing, all of my issues resolved. I had only one plug in the entire year that cleared up quickly, and was able to begin sleeping on my stomach. It’s amazing how much more effective a nursing baby is over a pump!
Corey, what a story! what a story!!!! Thank you for taking the time to tell us all that happened. I totally admire your determination and courage. And, I am just delighted to know that, due a circumstance you would have NEVER picked, suddenly, he latched and transferred milk and he “never looked back”. Wow. All I can say, is what I’ve said a million times before and what I hope I said clearly in the accompanying post: Time and patience. Yet, your situation required an abundance of time and patience! Yet, it does prove my point. There is always hope for a baby with Down Syndrome. Thank you for sharing your story. You will never know if there is a mother out there who will be able to “keep on keeping on” because of your encouraging words, but believe me, I know that mother is out there somewhere, and I am thanking you on her behalf.
Wow!! It´s an impressive story, thanks for share!!
Wow, thank you Corey so much for sharing your story. It is so beautiful and inspiring. I learned so much and will be able to use this knowledge to help the families I serve. You are a great Mama and I wish your family abundant blessings.