Pregnancy and CF: A new antenatal clinic supporting women with CF on their pregnancy journey

We are in a time where there are more people living with CF in the UK than ever before. As access to new treatments increases across the community, we have seen real progress for people with cystic fibrosis.

For many, lives are getting longer and healthier and, in turn, new doors are opening. One area which has seen significant change, is the number of people with CF becoming parents. The latest numbers from our CF Registry report revealed that 103 women had babies in 2021, compared to 56 in the previous year.

One hospital has responded to this rise by setting up a service specifically for people with CF who are pregnant or planning parenthood. The Royal Brompton in London has around 600 adult CF patients, making it one of the largest centres in Europe. In 2021, 27 women with CF at the hospital became pregnant, a fourfold rate rise which continued in 2022. Previously, the CF service only saw seven pregnancies each year.

This first-of-its-kind monthly clinic was set up in 2021 and involves a multidisciplinary team of CF specialists, including  consultants, psychologists, nurses, dietitians, pharmacists, and physiotherapists, as well as clinical genetic counsellors, physicians specialising in pregnancy, and local midwifery teams, who meet virtually with pregnant women and their partners.

The reproductive and maternal health service includes group virtual meetings, such as exercise classes, and one-to ones for more personalised advice on having a healthy pregnancy with CF. From conception, right through to delivery and the early days of parenthood, the clinics aim to provide couples affected by CF with the info and support they need during their pregnancy journey.

Dr Imogen Felton started working as an adult CF consultant at Royal Brompton Hospital in 2019 after completing the Trust’s Training Fellowship. During this short time, she has seen “seismic changes” in the CF landscape. This, she tells us, was part of the motivation for setting up the clinic.

“What quickly became apparent to us was an oncoming wave of planned, as well as some unplanned pregnancies, in women who had started taking Kaftrio after it was made available in 2020, and so evidently our service model needed to change rapidly to reflect this,” Imogen explains.

“Kaftrio stops the build-up of sticky mucus in the organs that causes many of the symptoms of CF. It is thought that Kaftrio may be impacting female fertility through a combination of direct effects on the reproductive tract, as it is other organs, making it easier for women to become pregnant, as well as the significant overall improvement in lung and nutritional health in women taking the medicine supporting successful conception.

“By early 2021 we knew we needed to focus our efforts by providing a service that was dedicated to understanding and supporting the needs, both clinical and physiological, for those women.”

The clinic was started in the midst of the COVID-19 pandemic. Amid all the uncertainty, it was a safe space for people, many of whom were shielding, to connect and reach out to others going through something similar. “They couldn’t attend NCT classes because of the pandemic and for many it was an invaluable opportunity to meet each other virtually and get that emotional peer-to-peer support,” Imogen explains.

There are guidelines about where pregnant women should receive their care. The success of the clinic at the Royal Brompton has even led to some important changes in these guidelines. “Previously, all women with CF were recommended to attend specialist obstetric centres for their pregnancy journey, labour and birth. Now, there is more flexibility, and where it is appropriate and feasible, women have been able to receive their care closer to home as per their wishes, through our joint working with local obstetric and midwifery services,” explains Imogen.

“There are considerations which are very specific and can be complex for people with cystic fibrosis when it comes to parenthood. They might rarely bring it to clinic consultations, but in having a service where we monthly check in, we’re able to devote time to have those longer, wider, often deeper conversations and inform them of the rapidly evolving evidence base in this field.”

For the many people with CF who have used the service, it’s made a big difference to their overall experience. Charlotte, 32, and her husband Iain conceived through IVF in 2021. Their “little miracle” Archer arrived in July last year, and Charlotte says she couldn’t be more grateful for the support she received throughout her pregnancy. “It’s really important to feel supported through such a big life event, as pregnancy can throw about so many complications and each pregnancy is different. When Archer finally arrived in July 2022 at 37 weeks, I couldn’t wait to show the Brompton my little miracle and thank them again for helping me to get him here safely.”

If you have cystic fibrosis, or have a partner with CF, and are thinking about having children, it’s completely

normal to be grappling with lots of different questions about pregnancy. You can find lots more information in our Starting a Family booklet. 

Some people may decide they don’t want children, for others it isn’t an option as they aren’t able to. Cystic fibrosis can be a contributing factor in people deciding not to have children, however others may just not wish to be a parent. 

Being told that you can’t have the family you wanted, for whatever reason, can be devastating. Your CF team may be able to provide emotional support or direct you to other sources of support. You can also contact our Helpline on 0300 373 1000 or at [email protected]. 

We also recognise that for those who don’t benefit from Kaftrio, the journey to becoming a parent might not be

straightforward. Please get in touch with our Helpline with any questions.