Originaly published January 30, 2020
“It’s commonly known that babies with down syndrome can’t breastfeed.” Annie told me.
“Really? I never knew that.”
“At least, that’s what a lot of people in the medical field well tell you.” she continued
” Looks like you proved them wrong! Tell me your journey.”
Annie settled in and walked me though her amazing journey of beating the odds…
Fortunately for us, I gave birth to my perfect daughter Charlie with a midwife at the birth center and no one told us that we couldn’t breastfeed.
The first thing to know is that my little princess had low muscles tone. This made it very difficulty for her to suckle. It was also why it took a lot of energy just for her to breath. She would quickly tire and was falling asleep very easily (and for long periods of time). I remember waking up in panic the first night because my baby had been sleeping for 5 hours straight and I was expecting her to wake me up to nurse like other babies do.
See, babies with down syndrome follow their own logic. No baby is a textbook baby, but these special babies are really nailing it at confusing their caregivers. She wasn’t waking up to nurse, she wasn’t searching for the breast, she didn’t cry until her first vaccines and barely ever after that. Until she became a toddler. They are perfect textbook toddlers.
It would have been so easy to just give up on breast feeding, but I didn’t. We supplemented Charlie with a small cup, pumping and setting our alarm clock too feed her during the night. When we consulted the breastfeeding clinic of our hospital, they suggested to give her a bottle to train her mouth’s muscles. When I was telling you that these babies are special, that’s proof. For two months we exercised her muscles so she could nurse efficiently. And it worked! At 2.5 months she was taking 100 gr/day, without bottle or any device.
It was important for me to breastfeed my daughter because I knew she was vulnerable to infections and sickness due to her poor immune system. We will never know if it really helped her to be breastfeed but my instinct tells me that it did.
What I didn’t know is that she also had dysphagia and drinking liquids was dangerous for her. For more than 2 years she never drank more than 1 oz per day in addition to my milk. She was simply chocking every time, and very early on was afraid of drinking from something other than the breast. Basically, she could not deal with the amount of liquid in her mouth and swallowing at the same time. Having low sensibility in her mouth also didn’t help. But it was not as problem for her to nurse because the effort she was making to suck properly was stimulating her mouth enough and she could control the speed and the quantity of milk she was getting.
I ended up breastfeeding her for 2 years and 3 months. Shortly after I stopped, I heard of you and I could express more milk to have a bead made. It meant the world to me.
So, it might not be the norm to breastfeed a baby with down Syndrome, nor to convince that it was the best option for us. Today, this warrior baby is 5 years old and a wonderful little girl who’s getting ready for school next year! And today I’m grateful to have a beautiful bead that I will proudly wear for her first day of school.
P.s. When I show her the bead last week she was emotional and wanted to keep for herself saying that it was her milk.