Breastfeeding Down Syndrome

I’m honored to a part of an initiative of the organization Julia’s Way (facebook: @juiliasway2016) to spread the word to new moms of a child with Down syndrome that breastfeeding really is possible even though they are often told otherwise.

Only two weeks ago I finally stopped breastfeeding Gigi at the age of two years and seven months. This is the baby that I was told during my pregnancy would possibly never breastfeed. During my pregnancy I often heard that the chances of being successful at breastfeeding a baby with Down syndrome was low – they tire easily, they don’t latch, and so on. Despite having a successful first few days of nursing after she was born the negativity continued. Lactation consultants continued to warn me that due to her low muscle tone she may stop nursing and that I should plan to use a bottle.

Breastfeeding Gigi wasn’t easy, it took two hands, one to hold her head and the other to hold and guide my breast. It also took lots of patience for quite a while but two and a half years later we were still nursing. We never actually did use a bottle. In fact, her low muscle tone due to Down syndrome didn’t prevent her from nursing but prevented her from being able to successfully swallow from a cup, a bottle, or a straw. She would constantly cough when she tried to take liquids from anything other than the breast which concerned her doctors. The coughing also caused her to develop and aversion to drinking from anything other than the breast. It was all due to the fact that her low tone caused her to not be able to maneuver the liquid in her mouth in a successful way. However she somehow was able to manage breastfeeding.

Having me be her only source of hydration was stressful but in the end it worked for her. Per her doctors’ recommendations, we had a swallow study back in May that showed even though she’s coughing she’s likely not aspirating so at that point I really started to push the wean. One evening Brendan gave her a straw cup of whole milk sweetened with a little bit of vanilla syrup as I watched while out of her sight and couldn’t help be a little bit sad. It was the beginning of the end for us but she hasn’t looked back. I really don’t think I had much of a supply left anyway, so it was time.

That’s only my story but there are many others. The bottom line is that many of us are told when we have a Down syndrome diagnosis that breastfeeding is a challenge and may not happen. Yes it is a challenge but there are many, many success stories. Here is a video about breastfeeding babies with Down syndrome, produced by the team from Julia’s Way. It includes a bit of my story and some stories from other moms who also participated in a beautiful photo shoot.

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