Breastfeeding My Baby on Trikafta

With an exciting uptick of women with CF having children, naturally there’s been an increase in women deciding how to feed their babies. For various reasons, many women with CF will choose to formula feed, while others will choose to breastfeed.

Breastfeeding while the mother is taking Trikafta comes with its own set of risks and challenges. However, from my own experience I have learned breastfeeding on Trikafta is doable and can be done in a safe way with some additional monitoring of your baby.

What is known about breastfeeding on Trikafta?

Drug levels in breastmilk and baby

Little is known about Trikafta and breastfeeding but the few available research articles support the belief that it is safe to breastfeed while taking Trikafta.¹ Trikafta and it’s three ingredients--Tezacaftor, Elexacaftor, and Ivacaftor--do pass into breast milk at low levels, less than 1 micromolar over the course of 60 days postpartum.¹ Tezacaftor has the highest concentrations of the three at 1 micromolar and increases over time, while Elaxacaftor and Ivacaftor were reported at 0.1 micromolar and lowered over time.¹ These volumes are a tiny percentage of the drug plasma levels found in the mothers actually taking Trikafta.

Effects on baby

In a survey of adult CF centers in Europe, the United Kingdom, United States of America, Australia and Israel, twenty-six women reported breastfeeding on Trikafta.¹ The extent of breastfeeding (i.e. full time, part time formula fed, etc.) was not reported. Of the 26 women surveyed, there were no reported complications in the infants.¹

However, in another report of women breastfeeding on Orkambi, another CFTR modulator containing Ivacaftor, a single case of high bilirubin, aspartate aminotransferase (AST), and alkaline phosphatase all measures to test liver function were reported.¹ When the amount of breastfeeding was reduced to 25%, the liver functions returned to normal.¹ According to the authors, abnormal results could not be definitely attributed to Orkambi.

Creating a plan to monitor my baby

It’s hard to know what is right in a situation like this with limited data. With so little information and no formal guidelines to support me, I wanted to make sure my baby received the many benefits of breastfeeding but remained safe and healthy while I was taking Trikafta. Together with my CF care team and my son’s pediatrician, we crafted a plan to monitor him while he was breastfeeding.

Our plan reflected that which is recommended for patients taking Trikafta themselves. It included blood work to check liver enzymes and eye exams to check for cataracts. We agreed blood work would be drawn every 4 months and eye exams done at every well visit with an additional and more thorough exam done after 9 months with an ophthalmologist. We hoped this plan would catch any abnormalities early on.

Our experience so far

First liver enzyme and eye exam results

Admittedly, I was quite nervous to have blood drawn on such a little baby at 4 months old. I requested they get the blood sample through a heel prick which involves applying a hot compress, pricking their heel, and then squeezing the blood needed into a tube.

Trigger warning: our baby screamed bloody murder the entire time the blood was being taken and took awhile to calm down afterwards. It was a bit traumatic to see him so upset but I knew it had a purpose. My advice is to bring someone with you to be an additional support person.

Thankfully, the next day the doctor called and his liver enzymes were all normal! What great news!

Additionally at each scheduled well visit, our pediatrician uses a small light to flash into his eyes and check for any signs of cataracts. Each eye exam has resulted in healthy eyes which makes me very happy and relieved. He will have a more thorough dilated eye exam after 9 months old as a precaution.

Breastfeeding on Trikafta comes with a few risks but with close monitoring of baby and I, I believe it will only enhance our breastfeeding journey.

Do you take Trikafta? Have you breastfeed with CF? Share your experience in the comments below, or in our stories and forums!