Pregnancy Outcomes in Women with Cystic Fibrosis: A New Canadian Study 

As more women with cystic fibrosis (CF) are choosing to start families, understanding how pregnancy and birth outcomes compare to the general population is becoming increasingly important. At a national level, this topic has been largely unexplored due to very limited data being available. Now, a new research study published in the Journal of Obstetrics and Gynecology Canada (JOGC), helps to fill this gap.  

Led by Stephanie Cheng, Director, Registry at Cystic Fibrosis Canada, in collaboration with Canada’s Drug Agency (CDA), this study used data from the Canadian Institute for Health Information (CIHI) to describe pregnancy and newborn outcomes for women with CF and women in the general population. The study looked at 124 mothers with CF and 154 of their newborns over a 15-year period.  

Key Findings  

One of the first things the researchers noted was that the vast majority of deliveries among women with CF (84%) were in hospitals that also had CF clinics. Coupled with a high rate of induced labour (50%), this could suggest half of the births to CF mothers were a planned delivery at a hospital offering the desired specialist care rather than at a local community hospital.  

The study found that among babies born to women with CF, many were: 

• Born preterm (before 37 weeks of pregnancy). 
• Considered small in size or low birth weight (less than 2,500 grams or 5.5 pounds). 
• Admitted to the neonatal intensive care unit (NICU), suggesting a higher need for medical support after birth. 

For mothers with CF, the post-delivery period also came with increased challenges. They tended to: 

• Stay longer in the hospital after giving birth. 
• Use more healthcare services. 

While this study found high rates of certain labour and newborn complications and these findings may sound concerning at first, the overall outcomes of pregnancy and delivery were very good, and the rates of severe outcomes were very low. Nevertheless, the results of this study are incredibly valuable. They help healthcare providers better understand the additional care women with CF and their babies might need during and after pregnancy.  

The Role of Modulators 

It’s worth noting that the data in this study covers births from before the widespread use of CFTR modulators like Trikafta. Stephanie Cheng and her team emphasize that ongoing research will be needed to assess how CFTR modulators are changing the landscape of pregnancy and motherhood for people with CF.  

This is one of the first national studies in Canada to look closely at pregnancy and newborn outcomes in women with CF. Looking ahead, there are exciting opportunities to expand this research. One important step in furthering this research, is incorporating CF-related clinical information like lung function and pulmonary exacerbations. This can be done by linking the data collected in the Canadian CF Registry with other healthcare data. This kind of data linkage could offer a much more complete picture of what pregnancy and childbirth look like for women with CF in Canada.  

As research continues, we will be provided with even deeper insights to help tailor care that supports healthy pregnancies and babies.