You can’t look at a picture of our breastfeeding babies without noticing this guy’s adorable mohawk. Meet Lewis, affectionately called Lewi by his mom, Shu. This pair is our latest in our Breastfeeding Superstars and we think you’ll love their story!
Lewis was born with several heart issues including a ventricular-septal defect, an atrial-septal defect, and a vascular ring. In addition, he has chronic congestion, making it hard for him to breathe through his nose and thus maintain a sustained suck, which is required to successfully breastfeed. Shu had hoped to have an opportunity for skin-to-skin time directly after Lewi was born in order to bond and initiate breastfeeding. His doctors, though, understandably had other ideas due to his heart issues. Shu and Lewis were only given about five minutes before he was taken away to be examined by a host of specialists. The next time Shu saw her son was several hours later in the Neonatal Intensive Care Unit (NICU). He was having difficulty sustaining his blood sugar, which is a common problem in children with Down syndrome. For hours, or sometimes even days, after birth, babies with Down syndrome (DS) can be too tired to sustain any sort of sucking, whether at the breast or from a bottle. This sleepiness makes it difficult for them to stay awake so they can eat enough to keep their blood sugar in a healthy range. This is often managed by giving glucose (a type of sugar) through an IV. Glucose is necessary for energy to help a baby’s brain and body function. If a baby is too tired to eat, his glucose will go down, and if his glucose goes down he will be too tired to eat. This can be a very dangerous feedback loop for new babies but is easily detected and managed. IV glucose is usually a temporary measure until the baby can take in enough calories on his own. If baby is not able to take in enough calories orally within the first several hours the medical team will usually suggest placement of a nasogastric (NG) tube and this is what Lewis’ doctors recommended. This would allow Shu to provide breastmilk through a tube that would go in through Lewis’ nose directly to his stomach. They would also be able to wean him off the glucose IV. Shu and her husband were hesitant, as they had heard stories that an NG tube could make feeding issues worse and Shu was absolutely adamant that her ultimate goal was to breastfeed her son, Lewis, just as she had his older brother. Eventually, Shu and her husband trusted the doctor’s decisions and allowed them to place the NG tube. Thankfully, the NG tube ended up being a temporary but necessary part of Lewis’ feeding plan. Within a week this Superstar was taking in all of his calories at the breast!
Many babies with congenital heart defects are unable to breastfeed at some point before their heart repair due to worsening heart failure, which leads to weakness and fatigue. But not Lewis! Lewis was able to breastfeed right up until his surgery. He had a few days of recovery but was back to nursing as soon as the doctors cleared him. He and his mom never missed a beat. Shu understands how lucky they are that Lewis was strong enough to nurse directly.
When asked what advice she has for new mothers attempting to breastfeed their babies with DS Shu says, “Seek out your community for support!” Shu and Lewis’ story is a tribute to this philosophy and demonstrates how important it is to have the support of those close to you to help with breastfeeding success. Shu’s husband took on the heavy lifting of caring for their older son, allowing her to focus fully on getting Lewis to the breast. She spent as much time as she could in the NICU, patiently working with the nurses and lactation consultants to get Lewis nursing exclusively. Friends also visited the pair in the hospital, bringing food and support and cheerleading her efforts. Shu was absolutely convinced that she could and would give Lewis the same benefits of her milk that her older son had. She says, “Having breastfed my older son, I experienced the wonders that breastmilk does for the immunity and general health. I read that breastfeeding strengthens the muscles around the mouth, which helps with speech development.” She wanted those benefits for Lewis. The lactation consultants in the NICU showed Shu how to use a nipple shield. When used correctly it makes it much easier for babies to latch. It is usually a short-term tool and most babies can be easily weaned from using the shield after a few weeks and this was the case for Lewis. It helped him while he developed the skills and strength needed to nurse.
When asked about resources that Shu found helpful she says, “Sadly, the literature provided by the lactation consultant was very outdated. It had grainy photos of babies who, for lack of a better description, looked impaired. Had I received the DS diagnosis at birth, those images would have made me terribly upset. This is part of why I wanted to participate in this project.” Her experience gets straight to the heart of why we at Julia’s Way are so dedicated to developing an up-to-date, comprehensive breastfeeding resource for mothers of babies with DS. In order to help her process the diagnosis, Shu sought out other families like hers on Instagram and other social media sites. She found searching #theluckyfew, #nothingdownaboutit or #downsyndrome to be helpful. You can find other inspirational stories, posted by Julia’s Way, under #nursingdownsyndrome and #nursingT21. Share your story and tag us to help inspire and encourage other moms.