Becoming a mother, I knew in my heart I wanted to do anything I could to benefit the well-being of my son, Isaac, and breastfeeding was one of them. Before having Isaac, I did everything I could to prepare myself for what I thought was going to be a beautiful breastfeeding journey. I researched all of the “must haves” for breastfeeding, like the best breast pumps, the fancy nursing pillows, nursing clothes, and I even joined support groups. I came in with as much knowledge as I could, but I knew there would be a learning period for Isaac and me. However, I never imagined I would be learning how to breastfeed my son while learning how to care for a child with cystic fibrosis.

When he was 10 days old, we sat at our local children’s hospital and received Isaac’s CF diagnosis. We learned at that appointment Isaac was likely pancreatic insufficient. The stools I thought were normal were actually caused by CF and that Isaac would need pancreatic enzymes to absorb and digest his food. One of the first questions that I had for our dietitian was, “Am I still going to be able to breastfeed?” She reassured me, “Yes, and I encourage you to continue breastfeeding.” At that moment, I knew it was going to be more complicated than I had planned for, but there was hope and I was committed to making it work.

Although the breastfeeding journey needed a few extra steps, I was able to breastfeed Isaac exclusively past his second birthday, which was my goal. Here’s what my experience taught me and what made our breastfeeding journey successful.

• Do the research: This goes in hand with anyone wanting to breastfeed but knowing and educating yourself on breastfeeding is a great start. There is a lot to learn especially if you decide to pump breastmilk for your child. Isaac went through the “cluster feeds” that are common with breastfeeding. There were many times I would give Isaac his pancreatic enzymes, let him nurse, and within 50 minutes was redosing his enzymes because he wanted to nurse more. Because of his CF, I did not always feel sure if the frequent feeding was enzyme-related or if it was natural.

It seemed like the first couple months, I lived in a chair with Isaac frequently nursing. We tried to stick to nursing every two hours and followed Isaac’s lead. We had to work with knowing that “cluster feeding is normal and helps build your milk supply” while determining if we needed to adjust to Isaac’s enzymes. It’s often necessary to add calories to the diet of a child with CF. I was fortunate to not need to, but that is just how our journey went. I relied on my CF care team to help me determine what was best for Isaac.

• Stay organized: In the beginning, breastfeeding Isaac became overwhelming because I had to give him enzymes before he nursed, note how long and how many times a day he nursed, track soiled diapers, watch for changes in his stools, and monitor his weight. I frequently checked with Isaac’s CF team during his first months as we tried to find the right dose of enzymes for him.

Staying organized was essential. and during Isaac’s first year I relied on an app called Baby Tracker to track all his information. One of my favorite features allowed me to note which side he nursed on. I would then time it, which was important because the enzymes were effective only for a certain amount of time. At the end of the day, I could see when Isaac received enzymes, how many dirty diapers he produced, and how many nursing sessions he had.

• Set goals: Setting small goals was useful and helped me encourage myself while breastfeeding. I told myself I’d like to make it nursing for one month. After that, I set a new goal. I went from one month to six months, to one year and, finally, two years. I set realistic goals that were best for my situation.
• Don’t be afraid to ask for help: I found it’s all trial and error when it comes to breastfeeding, and there was a little more testing because of Isaac’s CF. It was hard to figure out how to give Isaac his salt and enzymes before nursing. Some women place the enzymes directly on their nipples, but that did not work for us. Giving Isaac his enzymes in applesauce using the smallest spoon I could find worked best. At the beginning, I also had issues with latching. I relied on a nipple shield for assistance. A few months after Isaac was born, I met with a lactation consultant who was very helpful. At first, I felt embarrassed going, but ultimately, I was relieved I did. I received help for the issues I was having, and I received so much encouragement about what I was doing. I felt like “Supermom” after that visit! Having that support and guidance in someone who specializes in that field was a game changer for me.
• Find your support system: Having support was key to successfully breastfeeding Isaac. I learned that a support system does not have to include family or current friends. I had very few people in my life who breastfed that I could turn to for advice or just talk to. I also received a lot of backlash and comments from when Isaac was nearing his first birthday from people who thought I should stop breastfeeding Isaac once his teeth came in.

Our dietician was essential in the support system we needed. At his one-year CF care center visit, I worried that our dietician would tell me to stop breastfeeding. I was pleasantly surprised that she supported my decision to continue to breastfeed. I knew I needed more support, so I joined a Facebook group for encouragement and to connect with other nursing mothers. I was lucky enough to find a group of mothers who were currently or who had breastfed their children with CF.

• Communicate with your CF team: Communication is key in any relationship, including with your CF care team. I would not have breastfed Isaac for as long as I did without communicating with our CF team — and trusting them. I expressed early how important it was to me to be able to breastfeed Isaac.

The team was on board and there for us the entire time. We talked a lot about Isaac’s growth and his stools. We had a point where Isaac started getting oily stools and his weight gain slowed. After discussing it, we decided as a team that Isaac probably had reflux. We made several adjustments and soon we were back on track. Isaac was much happier and thriving again.

• Take care of YOU: It was important for me to take care of myself. Breastfeeding — whether it’s direct or pumping — is a full-time job and it can take mental and physical tolls. I had a lot of anxiety when I was nursing Isaac because I wanted to make sure he was getting exactly what he needed. I set myself up for success by drinking plenty of water and eating the appropriate number of calories from healthy foods. Make sure you are moving, and just enjoy every moment with your child. Take care of your mental health and be proud of yourself. Whether you nurse for a few days or several years, you are a supermom for taking care of your child!

Interested in sharing your story? The CF Community Blog wants to hear from you.