Alex is a beautiful mother of three and an advocate for breastfeeding. When I learned that her youngest had Down Syndrome I wanted to know more, understanding that infants with DS have weak muscle tone and often struggle to develop even the simplest motor skills. Breastfeeding an infant with DS is a challenge for both mother and child, but it can be done!
I asked Alex if I could document her nursing relationship with Orion for two reasons. One, so that I could gift her photographs to commemorate the challenges she has overcome and celebrate their nursing bond. And two, to share her story so that other mothers and parents of children with DS may be informed and inspired. She advocated for the benefits of breastfeeding her son when she was surrounded by professionals that suggested it wasn’t beneficial or even possible. I know that her personal experience will shed light for some and help others gain perspective. At the time of this session, Orion was 9 months old and THRIVING. Given that October is National Down Syndrome Awareness Month I think our paths crossed at the perfect time.
Thank you Alex, for sharing your time and words.
Growing up I never really knew what I wanted to be as an adult, except one thing - be a mom. I loved how my mom could always make everything seem right, even when it wasn’t and I still truly admire her for that.
When I was pregnant with my oldest, I knew I wanted to breastfeed because it was what my body was made to do and of course it’s basically free! After he was born he latched immediately and nursed amazingly! It was such a relief and I felt empowered. It was then that I became incredibly passionate about breastfeeding and really began to advocate for normalizing breastfeeding.
So of course, when I became pregnant with my second son (and still nursing my first) it was no question of if I would breastfeed - but more so for how long. My oldest son was 2 1/2 and there was no end in sight, so I wanted to provide that same comfort and nourishment for my second son.
We had a beautiful and successful breech home birth with an amazing group of midwives. And after six pushes I was now the mama of one beautiful girl and two amazing little boys.
Orion came at 37 weeks + 5 days and was considered a late term preemie. So when he didn’t latch right away it didn’t shock me - he was tired and this is a whole new big world for him. But there was something different about him that I didn’t know yet. Orion was born with Down Syndrome. As things began to wind down and visitors left, I told my husband to go across the house to Orion’s room and get him a hat so his little head would stay warm. It was then that our midwives told him they believed Orion had DS due to several markers. When he came back with the hat I knew something was going on. Then he said it: “they think he has Down syndrome.”
I took a deep breath, looked at my little rainbow baby and said, “okay.”
We talked for what seemed like forever before my midwife gave me a make shift SNS (supplemental nursing system) and told me to use it if needed. We did not need to rush since his oxygen levels were good, but we did need to get him to his pediatrician for a referral to have his heart and gut checked and to have his diagnosis confirmed. He nursed a handful of times from Saturday to Monday and never for more than a few minutes before falling asleep. It was totally different than the first 48 hours with my first - Orion just could not stay awake for very long, so I spoon fed him my hand-expressed milk to keep him nourished between nursing sessions.
Our pediatrician appointment turned into a four day hospital stay. During this time, the hospitalist was adamant that Orion stay under the lights and would only allow him out every four hours for 30 minutes. Thirty minutes was not long enough to get him aroused and ready to eat, so they insisted I bottle feed him. However, I refused. I had worked so hard to nurse my first son and to advocate for the acceptance and normalization of breastfeeding; I was not going to let his diagnosis prevent him from the benefits of nursing. I was so frustrated with the doctors and nurses for so quickly deciding that he couldn’t do it. I had been pumping after every nursing session and we were helping them administer it through an NG tube.
We had a lactation consultant come see us and recommend we use the dancer hold - holding your breast with one hand and supporting baby’s jaw with the other. This helped Orion keep up his endurance, but she was still insisting we use a bottle after a 20 minute nursing session.
I couldn’t do it. She handed me a bottle and asked me how I felt.
I felt like a failure.
I asked to have them help me with an SNS, if I could syringe, spoon or cup feed him instead and the only reply I was given was “it’s not our policy.” The hospital would not meet me in the middle and I was not willing to bottle feed him - even if it was my milk! If he didn’t try he’d never learn. The nurses argued with me that we didn’t know how much he was getting by only being on the breast, so we suggested weighted feeds ... alas this was still not good enough for the hospital pediatrician (even though the scale proved he was gaining each feed) and she told us we could only be discharged if we fed him a bottle. I was so hurt. He was doing it and it still wasn’t good enough for them. We signed our discharge paperwork, my husband drank the bottle & we were sure the door didn’t hit us on the way out.
Once we were in the comfort of our own home, Orion’s feeds went much smoother.
I was still using a nipple shield and the homemade SNS, and after each nursing session I would syringe feed him 1/2-1 ounce. We did this for a week or so until I received my SNS in the mail. WOW! What a game changer that was! It took some getting used to, but once we had the hang of the SNS it was a breeze. I would let him latch without the nipple shield and nurse until he unlatched before putting the shield on and inserting the SNS into his mouth. This became the new norm. My toddler was still nursing, so I’d make sure Orion emptied at least one breast before allowing his brother to have the other. This led to them each having their “own side”, which you could see in my milk when I pumped! One side was fattier than the other - it was amazingly cool!
As Orion grew the pounds packed on, we got a scale and weighed him every 3 to 5 days. At one point he gained 2 pounds in TEN DAYS and it was around that time he self weaned from the shield. He’d refuse to latch if it was on. He eventually did the same with the SNS, which was a relief because the bigger he got, the more he wanted to play with it. He had longer sessions and still fell asleep a lot, but he was doing it and the scale proved it.
Nursing a baby is not easy. Nursing a baby with Down syndrome isn’t easy either - but it is worth it. Orion has amazing control over his tongue, can drink from a straw cup and is saying “mama,” “dada,” and practicing “bubba”. Nursing has improved his mouth muscles and helped set a solid foundation for when we need to start speech therapy. I am shocked by the amount of mamas I talk to who have a baby with DS and are told their baby can’t nurse! Who has any right to tell you what your baby can or can’t do? Down Syndrome or not, your baby can do anything you help them achieve.