Learning to Meet the Nutritional Needs of My Baby With CF

My son’s CF diagnosis created an unexpected challenge while breastfeeding him. But through practice, help from our care team, and support from the CF community, we found the perfect balance to meet his nutritional needs.

| 11 min read
Carolanne Cimino
Carolanne Cimino
Carolanne holding her baby, Bellamy, and smiling at the camera during a family photoshoot.

From the moment I found out I was pregnant with my first baby, I knew that breastfeeding was non-negotiable for me. The vast benefits of breastfeeding were always echoed to me throughout my childhood by my breastfeeding advocate mother. My firstborn, James, nursed for over two years and taught me more than any parenting book ever could have. Whether it be nursing into toddlerhood, co-sleeping, or babywearing, there was a long list of things that felt right for us. His rolls were the fruit of my labor.

We found out we were expecting another baby boy soon after weaning our first. With my husband and I being cystic fibrosis carriers, the possibility of our newest baby having CF was heavy in the back of our minds. I intended to breastfeed again, and I was looking forward to life as a mother of two. So when my son Bellamy was born, it felt like familiar territory. I seemingly picked up where I had left off. I did not worry about supply — I was confident in my abilities. I counted his wet diapers, I fed him on demand, and I trusted my body. We left the hospital after two nights, eager to be reunited with our toddler at home. Bellamy hadn’t gained as much as I would have expected given all his wet diapers and the fact that my milk had come in on night two. However, he was cleared to go home and that's all that mattered.

I continued to nurse my newborn around the clock and get some much-needed rest. We were scheduled to bring him to his pediatrician a few days later for a follow-up. I assumed it would be a routine appointment, that he would have gained enough that we could stop obsessing over the scale. But setting him on the scale, I was expecting more. Bellamy had gained some weight, but he didn't gain nearly what I thought he should have. I had been feeding him nonstop, there were constantly full diapers — how was he not gaining more weight? As Bellamy was my second baby, I had a fairly recent experience to compare this to, and something wasn't right. That moment was the first of many where it became clear that my baby was born with CF.

If you've made it this far, chances are a little poop won't scare you off, so I’ll jump right in. Breastfed baby poop is relatively consistent, at least in my experience. Yellow, seedy, you know the drill. So when the lime green and teal floodgates opened, I was completely shocked and highly concerned. “Not normal, something’s wrong” played over and over in my mind. Breastfed babies CAN poop with every feed in the early days, but 15–20 times in one day seemed excessive. While he was not technically failing to thrive, there was very clearly something amiss. When he was just over a week old, we received the call and confirmation that my suspicions were correct. Bellamy has cystic fibrosis.

Bellamy has a double f508del genotype which causes him to be severely pancreatic insufficient. He was not able to release the enzymes necessary to break down — and therefore absorb nutrients and fat from — my breastmilk. We finally had answers as to why he didn't gain as much weight as my first baby did. We started pancreatic enzyme replacement therapy immediately after our first clinic visit.  With my first infant, I was rather adamant that no solids be given before six months of age. You can imagine my shock and discomfort spoon-feeding applesauce and enzyme granules to Bellamy at 15 days old. My discomfort was quickly replaced with gratitude as I watched my frail and bony newborn plump up before my eyes.

Our clinic was supportive of breastfeeding from day one, and I am so thankful for that. The clinic staff were always a message away to answer questions, give poop opinions, and troubleshoot weight gain slumps. Our care team would alter Bellamy’s doses in between clinic visits if necessary. At our first clinic, we were given a scale provided by our CF family advisory board. We weighed Bellamy frequently at home, using that scale to monitor his growth. Exposing our new and fragile baby to doctor’s office germs for numerous weight checks was not feasible for us, so having this scale was a lifesaver.

When searching the internet for information on breastfeeding a child with CF, there wasn't a ton of information out there. Of course, it was easy to find the vast benefits of breastfeeding — decreased infections, decreased risk of disease later in life, even improved immunity through antibodies in breastmilk. I knew the benefits like the back of my hand.

What I did not know was that breastmilk alone was sometimes not calorically dense enough to meet the needs of an infant with CF. Reading this was like taking a punch to the stomach. I felt robbed for some reason and filled with fear. How devastating it was that no matter how hard I tried, or how much I “knew” about breastfeeding, it still may not be enough.
 

I connected with many moms on Instagram who were successfully breastfeeding their CF babes, and this made me feel less alone. Having these women as resources was invaluable. I saw and followed a vast array of CF baby journeys on Instagram, which gave insight into their everyday life. Many things influenced our specific journey with breastfeeding. I want to articulate that it is not lost on me that — in many ways — my son had a smooth first two years compared to many and that luck played a role.

There are many differences I noticed breastfeeding my baby with CF, compared to his brother. For one, there's no rolling over half asleep to nurse in the middle of the night. Instead, every feed is an intentional event. A spoonful of enzymes and applesauce is required for every feed, and it takes a little practice and preparation to master half-asleep administration. I would empty the capsules of enzymes into spoons before bed. That way, all I had to do when the baby woke was add applesauce to the spoon. This was so much easier than fiddling with enzyme capsules and attempting to pour the contents accurately in the middle of the night. After a while, the nighttime nursing routine becomes normal, I promise.

I remember asking our dietitian what to do when Bellamy was cluster feeding. Like many aspects of CF, we did things differently but made it work. Newborns and babies of all ages commonly cluster feed (several short feedings close together), for comfort or increased sustenance during periods of growth. This is completely normal! I always feed on demand, especially in the first year. The complications came with knowing how to dose enzymes for this.

Most people with CF have a maximum daily dose of enzymes, and usually, enzymes are active for a certain window of time. So our clinic encouraged us to keep feeds within 45 minutes. If he fed multiple times within the span — that's fine. If it was after, then we would need to re-dose. For shorter or back-to-back feeds, when it was clear he wasn't taking in large quantities of milk, I would decrease his dose slightly. If it was a full feeding, he would get his typical dose. Intuitively dosing enzymes is a skill that many moms of children with CF acquire over time through careful scrutiny and — you guessed it — poop investigation. I recommend always checking with the clinic first about what they recommend.

During his first year, we hit our fair share of weight plateaus. There was a point where his weight became concerning right around 5 months, and fortunately — due to his age — we were given several options. We could fortify my breastmilk with formula, introduce single-ingredient infant cereal, or pump breast milk and skim the fattier layers off to give a higher fat bottle. We went the cereal route, as it seemed easiest to control the ingredients he was getting that way. We would mix organic oatmeal or rice cereal with breastmilk and give Bellamy a few spoonfuls after a normal feeding. Eventually we would add coconut oil or coconut cream to the cereal mix to add even more calories. Twice a day, every day, we spoon-fed oily cereal slurry into our 5-month-old's mouth. Bellamy slowly got back on track. Once he hit 6 months old, a lot of the pressure I felt lifted.

At 6 months, a lot of babies are ready to start solids, and thankfully, Bellamy was there. He sat independently and liked to try new things. We were big baby-led weaning fans with the first kiddo, but with our CFer there was a sense of urgency about getting it all down the hatch. Offering high-fat, nutrient-dense, purees alongside breastfeeding helped us fill in any gaps he was having calorically. I’d nurse him first, then follow with high-fat solid foods within that 45-minute window. Foods that he (and I) loved include grass-fed beef, grass-fed butter, sweet potatoes, coconut milk rice, bison, high-fat oatmeal, veggies with added fats, beans, chia pudding, lamb, etc. I could go on forever. We mashed up foods and slowly gave him chunkier puree as he was eating better.

Pro tip: If you're feeding a pouch of puree, use an oral syringe to funnel in added fat like avocado oil, coconut oil, or even coconut cream!

There were times throughout our journey that I was messaging our dietician in distress, feeling like we were constantly fighting an uphill battle. Something about being the supplier of Bellamy’s nutrition left me full of guilt when he didn't gain.

When you're a nursing mom, it's easy to take your baby's weight gain personally. I'm here to tell anyone who needs to hear this: if your baby with CF isn't gaining weight it's NOT your fault. It's unfair, it's terrifying, it's soul-crushing, but it's not your fault.
 

If you have to supplement, or fortify, or spoon-feed fatty goop to your baby, that's OK! Cystic fibrosis is full of hard choices and gametime decisions about what's best for your child's health. This is next-level stuff, and comparing it to your old journey — or your ideal one — isn't fair.

When looking at Bellamy's growth chart, he looks like a pretty typical developing toddler. I always say that when looking at that consistent growth curve, most people have no idea how much we had to do to get him there. Countless hours breastfeeding, fortifying foods, spoonfuls of cream, obscene amounts of butter — I could go on for days. Shifting my mindset, I realize that all those hours spent pouring into my special boy have been some of the best times of my life. After this nearly two-year-long journey nursing my son with CF, I can truly say it has not been any less beautiful because of his disease. Now that he has weaned, I’ll always remember the bond that we shared and how blessed I am to be his mama.

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

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
Caring for a Child With CF | Nutrition
Carolanne Cimino

Carolanne is a Midwest crunchy mama who planted roots in Nebraska with her fiancé and their two boys. She is a stay-at-home mom, and motherhood has always been her calling. Carolanne is a health food lover, and you can frequently find her and her family cooking and enjoying healthy dishes together. In addition, she loves connecting with the CF community, and you can follow her journey as a medical mom on Instagram.

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