Sunday, November 13, 2011

Difficulty in Feeding a Baby with Down Syndrome

I received an email a couple days ago from a mother who is having difficulty getting her baby to breastfeed and take the bottle. My mom shared our experience in getting O to nurse here, but I thought I'd share a little more.

We had a very challenging time getting my brother, O, to eat in the early days. He was in the NICU for 2 weeks after he was born and had a gavage tube for much of that time. We finally had the NG tube taken out and my mom went into the NICU every 2 hours to breastfeed him. It was a lot of hard work, but he eventually caught on. Here’s a few thoughts, so hopefully some of this may help:

-Have you gotten in touch with a La Leche Leauge consultant? They have all sorts of tips and info on breastfeeding a baby who is having a difficult time. They helped us A LOT with Osiyyah!

-Have you tried using Nipple Shields? I know it sounds funny, but they help a lot of moms who have babies with a difficult time breastfeeding. You can order them online and a La Leche League consultant should have some or know where to get some.

-Have you tried using a SNS - Supplemental Nursing System? It’s a bottle that has a small tube coming out of it. You put your milk or formula (my mom pumped and used her milk) in it and then tape the tube next to your nipple. So, when your baby is nursing, she will be getting whatever she can from you, but also getting extra from the SNS. It doesn’t come out real fast, so it shouldn’t choke her. You can also use the SNS on your finger or pacifier for her to just suck on.

-Have you tried the Haberman (SpecialNeeds) Feeder? This is used for babies who have difficulty with bottles and nursing. 

-How do you hold her when you breastfeed her or bottle feed her? When my mom breastfed O she would have him in almost a 90 degree sitting angle. It seemed to help him get more down, easier and it wouldn’t drip out of his mouth.

-My mom also would have O's twin sister, Y, nurse until she had a let-down and then Y would get taken off and O would get put on. This milk is called the "hind milk", which is higher in nutrients anyways, but it was also easier for him to nurse because the milk was right there.

There's also a couple things to consider if you have a baby who doesn't want to nurse because they get tired quickly:

-How is the thyroid? A low thyroid (hypothyroidism) is very common in DS and it will cause sluggishness.

Does the baby have a heart condition at all? A heart condition will very often make a baby not want to eat much.

I know it’s very discouraging to see a baby who has little interest in nursing. I know it took a lot of work to get my brother going good on the breast. He had a bottle once, but we did not want him getting it much because we didn’t want him to get used to it. Once we did get him breastfeeding, he nursed until he was 2 years old.

Just keep trying and hopefully the baby will be able to do it well as you keep pushing her along!

Country Girl Designs


Becca said...

GREAT post!!!! Nipple shields were the only way I was able to get Samantha to latch properly and to breastfeed her. I am amazed by how few people know they exist, and if it weren't for a friend of mine who suggested it, I'd probably have remained in the dark. Fabulous product!

Liora said...

FAbulous info! Babies with low muscle tone or other simple SSB- suck, swallow breathe synchrony problems at or soon after birth it's essential to GET HELP right away and do not introduce any bottle before it is absolutely necessary. If you do need to feed in the early days EBM or other substances, better to use tube/syringe, or finger feeding, or even a cup rather than risk nipple confusion.

La Leche leaders can liase for free over the phone, or sometimes home visits. Visit to find leaders and groups in your area.

Another issue I see, is that with the Hepatitis B shot so soon after birth, we are seeing more and more typical babies unable to latch as well. For all babies with latch issues, the assistive use of Haberman feeders, SNS, good double electric pumps, nipple shields, etc can really save nursing. Just view them as temporary measures. You need to keep up your milk supply AND allow time for baby to get bigger/stronger, use the tongue properly. Typical bottles and teats have no controls and therefore drip the breastmilk right out, and do not develop proper muscle usage in fact they hinder normal muscle usage and replace it with an unhelpful motion which becomes habitual and makes BF even more difficult.

The haberman requires suction, unless you squeeze, which you can do at first to help teach baby that good stuff is in there. So, In the early days, using something like the Haberman feeder at first can help teach baby to nurse, in stages, working up to more and more suction needed. This is especially good for very weak, sick, or premature babies, because it gives instant reward yet builds musculature.

Once graduated from that bottle, though, choosing something like the ADIRI which is difficult to get breastmilk from (and makes the breast seem easy by comparison!) might be the way to go! I have several friends with typical babies who have all been through this. The moms needed to pump and feed all by bottle in the beginning weeks, and wean slowly off the bottle to the breast. One recently at 4 weeks started BF 5 minutes at a time without pulling 5 weeks totally breastfed. The other friend in town, worked for EIGHT WEEKS before baby was totally breastfed. But they stuck with it, and so so happy they did! The first baby is now just 6 weeks old, fully BF, the second baby mentioned is now one year old, and still nursing happily!

Liora said...

I wanted to share some more good online sources for BF a baby with DS.

MOBI motherhood international

Canadian Down Syndrome society

Oral MOtor Myths of Babies with DS
Sara Rosenfeld Johnson

Day To Day Guide to BF

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