How do you breastfeed a baby with Down syndrome?

Read time: | 10 minutes

Here's something that most people won't tell you:

Breastfeeding may be the hardest thing you ever do.

Or at the very least, harder than you can ever have imagined it being.

I'm not saying this because your baby has down syndrome. There are very few adjustments you have to make when it comes to breastfeeding, that is specific to your baby's condition.

In general, though, I find that parents underestimate the toll it takes on their emotions when they are committed to something, and challenges and struggles stand in the way.

The great news is that most babies, including yours, can have a long human milk feeding journey!

My hope with this post is that the information provided adds to your "breastfeeding toolbox", so that if any challenges occur, you can easily and quickly reach in and pull out a new technique you didn't know about previously.

In part 1 of this series, I covered the anatomical variations that may make breastfeeding your baby unique. In this post, I assume that you've already read it and are now looking for tips & techniques to navigate those differences.

(If you haven't read it already, now is the perfect time to do so!)

But before I get into the nitty-gritty strategies I know you're looking for, there's another foundation piece of information I think you need to know.

There are two parts to human milk feeding, which are interrelated:

1. Adequate stimulation and effective milk removal to maintain your milk supply

2. Your baby's ability to transfer a sufficient volume of available milk

A long-term human milk feeding journey requires attention to both pieces of the equation even when one part is not functioning optimally.

And while I hate to blame babies, in most cases, it's part number two that is most common and presents the most difficulties. As a result, without a plan to proactively protect your milk supply should that be the case, you may find that over time your milk supply starts to dwindle.

To prevent supply issues, I encourage families whose babies have risk factors for low transfer (as is the case with DS) to initiate hand expression early after delivery and to do so often. Once your milk starts to transition and increases in volume, you may find pumping to be more time-efficient.

When your baby demonstrates their superb transfer abilities and proves that they have the stamina to drain the breast adequately, additional breast stimulation from expression may not be necessary. Oh! Don't forget breast compressions, which are essential for babies who have a hard time with transfer or fatigue quickly!

For some, this may be sooner than others.

Similarly, some babies may not be able to feed directly at the breast immediately. If this happens, it can be frustrating, but try to be patient. Don't give up and keep trying as frequently as is healthy for your mental health & motivation.

"Breastfeeding" looks different to each family and human milk, fed in with any method or in any volume, is beneficial.

Lastly, but arguably most importantly, invite a lactation professional into your care team. Every baby's ability to feed (be it at the breast, bottle, or alternative feeding device) is different, and the circumstances that make up your situation will vary from the next person.

A Lactation Professional will provide you with a care plan specific to your baby and your situation; please do not take anything written in this post as a suggestion for what you should do for your baby.

Consult with your lactation professional before you try any of the things mentioned in this post to see if it's appropriate for your circumstances

Now, for the information you've been waiting for: Strategies breastfeeding your baby!

Hand Holds

Not often discussed separately from positioning/latching, hand-holds are different hand placements that maximize your baby's ability to feed by adding additional support in specific areas. They can be used in any feeding position and with any latching method.

For babies that have Down Syndrome, the Dancer Hold is the most popular and for a good reason! It reduces the size of the oral cavity and provides jaw/cheek stability, which improves both seal and suck strength.

There are a few variations of the Dancer Hold: The Classic Dancer position and the Two Finger Dancer Hold may be the most helpful for you.

The Classic Dancer Hold

When to use: When jaw support is needed, odds are your baby will need some jaw support for some duration of time.

How to do: Place your hand (palm facing you) under your baby's chin so that their chin is resting on the length of your index finger and the fingertips of your thumb and index finger can apply gentle but consistent support to the "squishy" part of the cheeks.

If necessary (in cases of really low oral tone) you can apply gentle traction toward your body, bringing their cheeks and lips slightly forward to better secure baby onto the breast.

The Classic Dancer position may be the only 'trick' you need to help your baby stay attached long enough to finish an effective nursing session.

The Two-Finger Dancer hold

When to use: When jaw support is not needed, but cheek tone is low, and if your baby can safely feed in a prone position, the Two-Finger Dancer hold can be used help your baby feed more effectively and transfer milk more quickly.

How to do: Laying in a laid back position and with your baby laying prone (belly down on your belly), curl your index and middle fingers at the second joint on both hands and place the flattest part of your fingers into and right below the "squishy" part of the cheek.

Positioning

Finding the right breastfeeding position is more of an art than a science.

It's all about experimenting to find the positions that you like most and that your baby can transfer the best in.

The only thing to be mindful of is that in about 20% of babies with down syndrome, there is excessive movement (laxity) in the first two vertebrae of the spine (Atlantoaxial instability).

Atlantoaxial instability usually is present without any symptoms, but when present, it means that excessive extension of the neck can put pressure on the spinal cord or brain stem. Abnormal pressure on the brain stem is something we don't want, so providing head and neck support to your baby is especially important.

The following are positions that tend to work well and present little risk of over-extension:

Here’s me feeding my daughter combining a laid back position with the straddle sit (koala hold) as well as jaw support!

Laidback/ Biological nursing

Perfect for babies who need extra postural support, who have hypotonia or a small jaw. This position works with gravity to help bring the tongue down, which may make latching easier for some. It's easily modifiable. For example, you can always snuggle the baby's knees and hips around your body while in a reclined position.

Straddle Sit

Best suited for babies who have decent core strength, an upright position such as the straddle sit can help babies stay more alert during feeding and can improve sucking ability in those that have neurological impairments. It's another position that uses gravity to help bring the tongue down (which is never a bad thing when your baby's tongue is always in the way!) and may help reduce ear infections for those who are prone to get them.

Side-lying

If your baby has a hard time coordinating the suck-swallow-breath process, a side-lying position may help them better manage the rate of flow and allow them to pause as needed. Most parents will adopt some version of a side-lying position for nighttime nursing as they find they can get better rest.

Latching

Latching is often a point of frustration for many parents and babies alike! It can take a lot of practice to get 'right' (check out What is a Good Latch anyways to see how I define 'right').

My tip for latching:

Extend your baby's heads very slightly, and place their lower lip on your areola about 1/2 inch from the nipple. Doing this will encourage your baby to open their mouth wide and engulf your nipple, as well as, provide more tongue contact with your areola. Wait until your baby's tongue is extended and is between your breast and their lower lip before bringing your baby in close, which will help prevent your baby's tongue from displacing your breast.

Sometimes visuals help the most so here are some resources that may speed up the process and cut down on the frustration!

When breastfeeding is still a challenge

Some babies will struggle with latching and staying attached despite having a good understanding of latching fundamentals and following every step and technique available.

In cases like these, additional tools may be necessary.

Many parents report a nipple shield being a tool that helped them facilitate at-the-breast feeding. It's essential to consider how using a nipple shield will impact your breastfeeding experience as there are responsibilities with nipple shield use.

You must ensure proper transfer, pump after use, and create a weaning plan with your lactation professional.

Sometimes babies need a bit more training before they are ready for at the breast feeding. Your lactation professional may suggest finger feeding, suck training, or oral strengthening exercises (along with a referral to your baby's SLP/OT/PT) to help your baby improve the skills essential for safe and effective feeding.

In part three, I will cover the treatment, therapies, and activities you can pursue as you work with your baby to develop their feeding abilities!

If you want to be the first to know when I drop the next part of this series, hop over and like my facebook page! It makes sharing these posts with your friends even easier!!

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