What I’ve Learned About Breastfeeding With CF

Breastfeeding when you have CF is more complicated than it is for people who don’t have CF. Here’s what I’ve learned about it with my kids.

| 6 min read
Janeil-Whitworth-headshot
Janeil Whitworth
Janeil smiling looking down at her baby.

As more women with cystic fibrosis enter the beautiful world of motherhood, they’ll question whether breastfeeding is the right choice for them. Breastfeeding while living with CF can be a positive and healthy experience for both mom and baby1. The difficulty comes when attempting to harmoniously combine caring for the needs of your baby along with your needs. It’s a juggle, a joy, and a sacrifice that I am living — for the second time. 

Breastfeeding as a new mom with CF four years ago — along with managing treatments, struggling with weight gain, and needing IV antibiotics frequently — was one of the hardest things I have ever done. I managed to nurse our son for 16 wonderful months before ending our breastfeeding journey. I was (and still am) proud of that time. It was a huge victory for me, personally. Admittedly, I made some mistakes. However, I am thankful to be able to breastfeed our second baby — my Trikafta® baby — this time with more experience and knowledge. I hope sharing what I have learned helps other mamas master their own juggle. 

Establish a Daily Rhythm

We all know CF treatments are time consuming. Guess what? So is breastfeeding. A “daily rhythm,” or a habitual but flexible way of dividing the day, is a very important tool I use to manage life with CF and breastfeeding. With a daily rhythm, I know what to expect and where to steal time for treatments before the day gets ahead of me and my caring for little ones. 

For example, our simplified daily rhythm looks something like this: I nurse my son when he gets up. Then, I start my morning CF treatments in bed. My four-year-old watches a show with a morning snack, the baby sits and plays, and I enjoy my morning coffee while doing airway clearance. Then, we all get up and start our day. 

In comparison, I usually wait until after the baby has eaten for the night and the kids are sleeping before starting my nighttime airway clearance. It’s just easier that way. 

At the moment this rhythm works for us, but I know it will change and adapt as the kids get older. The one caveat is that treatments and pills will always have a place in the line up. 

Remember a Drink for a Drink 

It is recommended that women with CF get an extra 500 – 600 calories every day to maintain their weight while breastfeeding2, 3. Since breastfeeding and making milk is a calorically demanding process (as well as dehydrating), it’s helpful to think of the currency of breastfeeding as calories. It takes calories to make calories. 

With my first son, breastfeeding depleted me of any extra fat reserves I had. I was very thin during the 16 months that I nursed him despite increasing the amount of calories I took in. It was a constant battle that ultimately played a role in my decision to stop nursing.

With our newest baby, the addition of Trikafta® has made maintaining my weight while breastfeeding easier in the past six months. 

I find the tip “a drink for a drink” helpful because it reminds me to take action to care for myself while nursing. Every time I nurse, I try to have a big chug of water to hydrate and a snack ready to eat before or after feeding the baby. Usually, it’s something quick — cheese sticks, granola bars, PBJs, or yogurt. The goal is to add calories little by little when I am nursing, sometimes 8–12 times a day, which eventually adds up. 

Educate Yourself About Breastfeeding

There’s no such thing as too much breastfeeding education. That’s because breastfeeding is such a dynamic process. Although people may not realize it, breastfeeding is also a learned skill that takes a lot of practice and problem-solving. During that delicate time of postpartum healing, family transition, and sleep deprivation, breastfeeding education is your safety net. Learning proper latch and feeding holds, baby’s cues, nipple care, and pumping maintenance is important. This is true especially when you are breastfeeding and you have CF. 

Surround yourself with an educated support team such as your CF care team, lactation consultants, your child’s pediatrician, and women with CF you feel comfortable with. Questions I asked included:

  • Which medications are breastfeeding-friendly? 
  • What about breastfeeding on Trikafta®
  • How might a CF exacerbation affect my ability to breastfeed?
  • How many extra calories should I consume while breastfeeding? 
  • Should my baby take a probiotic if I take antibiotics? 
  • What if I don’t make enough breast milk?
  • When is breastfeeding not the best choice for me or my baby?

Show Gratitude to Your Body 

These days there’s so much unfair pressure when it comes to breastfeeding. Sometimes it just doesn’t work out as you imagined, or you choose not to breastfeed for various reasons. Maybe, you enjoyed breastfeeding but it was too difficult to do full-time, so you supplement with formula as well. That’s OK!

No one with CF should feel badly if breastfeeding isn’t for them. Setting and honoring boundaries to protect your physical and mental health is the best way to show gratitude to your body.

The amount of calories you can eat and the hours of sleep you can get are — unfortunately — finite, but the love for your baby is infinite. If you are a mother, you and your body have already done amazing things! At the end of the day, that is enough, no matter how you choose to feed your baby. Don’t ever forget that, Mama!

References 

  1. Taylor-Cousar, Jennifer L. “CFTR Modulators: Impact on Fertility, Pregnancy, and Lactation in Women with Cystic Fibrosis.” MDPI, Multidisciplinary Digital Publishing Institute, 21 Aug. 2020, https://www.mdpi.com/2077-0383/9/9/2706/
  2. https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2014/06/Parrish_Feb_13_Part_2_CF.pdf
  3.  https://cavuhb.nhs.wales/files/cf-care/pregnancy-amp-nutrition-in-cf-pdf/

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Fertility and Reproductive Health
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Janeil is a Cleveland native who was diagnosed with cystic fibrosis at the age of 4. Currently, she works as a freelance writer for a health information site where she shares about living with CF. Her favorite thing is being a mom to her two young boys. During her small amounts of free time, she enjoys drinking coffee, reading too many books, and gardening. Connect with her on Instagram and Facebook.

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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.