When Your Baby With Down Syndrome Won’t Stop Breastfeeding

The title of this blog post is something I never expected to experience. In fact, one thing I heard over and over again when I was pregnant was “babies with Down syndrome often have trouble nursing.” I feel like all I heard was that breastfeeding may not be possible due to low muscle tone and an enlarged tongue. I was given paperwork showing tips on how to breastfeed a baby with Down syndrome. The clinic at Children’s Hospital Boston encouraged us to see a lactation consultant prenatally. My theory always has been that breastfeeding is a natural experience and is supposed to happen.

When Gigi was born she latched right away and I heard her swallow. The next 36 hours we worked persistently on breastfeeding. I remember being up with her from 4-6am the second day patiently trying to get her to latch. That’s the key – patience. Soon enough, we were successful. Lactation consultants came in daily expecting us to need help. When we didn’t, they acted as if this success wouldn’t last. We left the hospital with another goal checked off my list – “leave hospital breastfeeding”. Our pediatrician a week after the birth warned us that our success at nursing could be interrupted by tongue thrust. Yet we continued.

At one year there are no signs that I will be weaning from breastfeeding anytime soon. Wow. If only I knew this when I was pregnant because I worried so much about it. But now we are in another kind of predicament. One year was the age where I stopped nursing my other two girls as my body naturally began to produce less milk. One thing that has been concerning me lately is that once babies turn a year, it is suggested that they begin transitioning from formula/breastmilk to cows milk. Gigi, as I’ve mentioned in the past, stopped taking a bottle at around 5 months. Getting her to take a cup of any kind has been very difficult. I’ve tried small cups, big cups, sippy cups, cups with tops, cups without tops, squeeze bottles and all kinds of straw cups. I’ve even tried bottles again. She figured out the straw cup a while back. It’s not an issue of her understanding how to get the liquid, but it’s more of an issue of her liking the liquid. She doesn’t like thin liquids I guess unless she’s breastfeeding. Breastmilk out of a cup doesn’t work either.

So….at one year we’re still breastfeeding. And I posed this question to the other moms in my moms group with the Down Syndrome Diagnosis Network and asked if anyone else was in this “predicament”. Some said they were, and one said “what a wonderful predicament to be in.” Then I realized that she was right. Breastfeeding was always very important to me. With it’s personalized formula for baby and it’s antibodies to help the baby fight illness, there is nothing better to feed your child.

 

This is not an unusual success story. Yes, some babies with Down syndrome have a hard time breastfeeding, but many typical babies do as well. I know many, many babies with Down syndrome that breastfeed just fine and it seems like all of that info out there about babies not being able to breastfeed is exaggerated. I just wish I knew that before I had her so I didn’t have to worry so much. I hope that an expecting mom reads this and is a little more at ease.

So for now I will continue to try to teach Gigi how to take a cup, but I will also continue to appreciate the breastfeeding experience because she’ll be a big girl before I know it.

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