Julia Grace turned 10 months old on Saturday. I was happy to wave goodbye to her 9th month because it was a doozy. We have very little to complain about in terms of health for JG compared to other families with DS but for us her double ear infection plus a sinus infection followed quickly by croup and the added bonus of her sprouting a tooth was exhausting. She was sick off and on for basically the entire month. Two days after she turned 9 months old she suddenly started refusing all bottles. Four weeks later and she hasn’t taken a single ounce from a bottle since. We’ve been working on sippy cups but she still can’t manage them very well. When she first refused the bottle we weren’t sure what was going on because she didn’t seem sick so chalked it up to a strike and Ed added milk to her purees while I was at work and I nursed her more frequently when I was home. But then she spiked a 104.6-degree fever and she refused to eat more than a few spoonfuls of purees on any given day. I was worried that she’d lose weight and end up in the hospital for dehydration. The doctor who saw us and diagnosed her with an ear infection and a sinus infection told me the best thing I could do was to nurse her on demand to make sure she stayed well hydrated. And so I did. I nursed her whenever she wanted to, around the clock. It not only helped her stay healthy and out of the hospital but comforted her while she wasn’t feeling well and made me feel like I was doing something meaningful when I felt so helpless.

I have been a huge proponent of breastfeeding for years. As a former labor and delivery nurse and a one-time midwifery student I believe the benefits cannot be overstated and have always encouraged people to consider it. I find it comical how little understanding I had of breastfeeding when I was instructing my patients and now that I have personal experience I understand how challenging it can be in those early weeks and how much persistence it can take. Julia Grace was too sleepy and disorganized to get enough calories from nursing until she was almost 3 months old. During that time I learned a lot about establishing and maintaining my supply so I would be ready if she was ever capable of nursing. I pumped 10-12 times a day, 20-25 minutes at a time, around the clock. I attempted to put her to breast frequently but we just couldn’t manage to make it happen. She latched well from the start but fell asleep easily and we would both end up in tears. I felt I could pump or I could try to get her to suckle but not both because they were both so time consuming and overwhelming. New motherhood is exhausting and adding a pumping schedule to that was almost debilitating at times. I once calculated that I spent more than 40 hours a week between pumping, washing and maintaining the pumping parts, and feeding JG. Eventually I gathered tips and trips and became more efficient but those first weeks were a blur. My priority was always that she have my milk and for those first few months I had to accept that pumping was the way to do that. However, I’m so grateful that we persisted and that she eventually got the hang of it. Throughout it all we had the support of amazing Board Certified Lactation Consultation through the hospital and then privately that our insurance paid for and that came to our house. I know I would not have had the ability to be successful without them and am grateful that they believed in me and in Julia Grace’s ability to nurse eventually. Not a single person ever dissuaded me from nursing her just because she has Down syndrome. Since then, I’ve been saddened to find out that some mothers are told that they shouldn’t even bother to try to nurse their child with Down syndrome because they’re not capable due to low tone. In fact, unlike typically developing babies, babies with DS are capable of learning how to suckle properly much later in life, even if they don’t get it right away. That is an amazing and empowering thing to know! And the truth is that it may take a little longer and may take a bit more work but many, if not most, babies with Down syndrome are eventually capable of breastfeeding. There are also MANY babies with DS who go straight to breast, latch, and never look back.

I want mothers who are considering nursing their babies with DS to hear all of the success stories I’ve heard and to be encouraged. This is the inspiration for my next project, with a target release date of late July, right in time for World Breastfeeding Week. I am currently recruiting mothers in the New England area who are breastfeeding their children with DS and who anticipate they will STILL be breastfeeding in June of 2017 and who would be willing to drive to Massachusetts to participate. Please email me if you’re interested in further information.