Breastfeeding and Down Syndrome

Under normal circumstances breastfeeding can go one of two ways: extremely easy or extremely difficult. It seems as though there is no middle area. With my daughter I had the intention of exclusively breastfeeding... but the best laid plans, right? I had crap for nurses. I can say that now, looking back. I had absolute crap for nurses and lactation consultants. I was 21, this was my first child, and neither of us knew what to do. We had the tools, for sure, but I could not for the life of me get her to latch. The nurses answer was to provide me with formula because "a baby has to eat."

With my second child, Joey, nursing was the only option. I absolutely refused to allow formula near him and successfully breastfed him for 22 months. I know, that may seem shocking, but I had my reasons and don't really care how anyone else feels about them!

When Jeremy came along I was determined to offer him the same. Needless to say nursing Jeremy has been a long, difficult road. I have read that initial contact in the hospital (or elsewhere) right after birth is important to establishing a good nursing relationship. Maybe it was the hours we were apart, or the weeks in the NICU that helped establish the current nursing habits.

One thing that makes breastfeeding extremely difficult is Jeremy's low muscle tone - hypotonia. Do not confuse low muscle tone with strength, however. Jeremy's is not affected by severe hypotonia, but where it does affect him is on the right side of his mouth, his core, his neck, etc. Unfortunately babies need all of these parts to work cohesively to nurse successfully. The other thing that made it very difficult was the complete AV Canal heart defect. This heart defect would tire him so quickly he simply did not have the energy to breastfeed and nurse long enough to satisfy himself

I have managed to get (or force, however you want to view it) Jeremy to latch a few times every day, since his surgery it has become somewhat easier. Because I am so adamant that he nurses I have also pumped like a mad woman for 6 months to make sure I had a well established supply for the little guy.

You may be wondering why I am so adamant that he nurses and receives primarily breast milk. Although most folks know breast milk is the best nourishment for a baby, children with Down syndrome are far more susceptible to illnesses, leukemia, digestive issues etc. While there is no guarantee that it will keep all of that at bay, I feel better knowing I have helped in some way. I am also adamant that he nurse from the breast because of speech development. Often children with Down syndrome have a difficult time with speech and speech development. Nursing forces babies to utilize all aspects of their mouths and this in turn helps with speech development.

My goal here is to give Jeremy the best start from all facets of development. Nursing him is only a small step but it has such a huge impact on most early developmental areas children face.

Links to breastfeeding a child with Down syndrome as well as recommendations:
Nursing baby with Down syndrome
WHO Breastfeeding
La Leche League International