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!


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