First-of-its-kind maternal health clinic and antenatal classes for expectant mothers with cystic fibrosis

Royal Brompton Hospital has set up a new service specifically for women with cystic fibrosis (CF) who are pregnant. This service was created due to the rise in the number of pregnancies in women with CF over the past 12 months.

Royal Brompton has around 600 adult CF patients from all over the UK, making it one of the largest centres in Europe. In the last year, 27 women with CF have become pregnant and been enrolled onto this new CF maternal health clinic, of whom, 13 have already given birth. Previously, the hospital only saw seven pregnancies each year. This rise has been linked to the availability of a new CF medicine in the UK, Kaftrio. 

This first-of-its-kind clinic involves a multidisciplinary team of CF specialists, including consultants, psychologists, nurse specialists, dietitians, pharmacists, physiotherapists and clinical genetic counsellors, who meet virtually with the pregnant women, and their partners where appropriate. This can take the form of group meetings, such as exercise classes, or one-to-ones for more personalised advice on having a healthy pregnancy with CF.

Zelda Beverley, specialist CF physiotherapist, runs the online exercise classes for the mums-to-be and describes the clinic as creating a sense of camaraderie among the women. She said: “The clinic almost acts as an alternative antenatal class for women with CF.” Zelda is also hoping to start up post-natal Pilates classes once the new mums settle into their new routines.

The clinics run once a month with weekly exercise classes. Given the importance of infection control for people with CF, which restricts social mixing with each other, peer support has been welcomed as the online space provides a unique environment for women to chat to other pregnant women with CF alongside their specialist healthcare providers.

Specialists from the clinic also work in partnership with obstetric medicine and maternal health specialists at Chelsea and Westminster Hospital, as well as the women’s local obstetric and midwifery team, to provide all-round holistic care, from conception right through to delivery and the post-partum period. Working with local obstetric units across the country means that optimal care can be available for women with CF wishing to deliver nearer their homes.

Dr Imogen Felton, consultant in adult cystic fibrosis and respiratory medicine at Royal Brompton, said: “The rise in pregnancies we are seeing appears to be an unexpected side-effect of Kaftrio. This new CF medicine stops the build-up of sticky mucus in the organs that causes many of the symptoms of CF. It is thought that Kaftrio is either affecting the reproductive tract, as it is other organs, making it easier for women to become pregnant or the significant overall improvement in lung and nutritional health in women taking the medicine may also be making it easier for them to conceive.

“Given that many of our patients are now choosing to become pregnant, we thought this was a great opportunity to develop a service to support them and their new opportunity. The CF maternal health clinic provides support, advice and if necessary, clinical intervention, so that women can have a healthy pregnancy and delivery. The clinic also provides support for women during the post-partum period.”

Emilia Hunt, 30, was just eight months old when she was diagnosed with CF. After marrying in 2012 after a long period of ill health, she and her husband Harrison have been trying to conceive for almost 10 years, but within weeks of starting Kaftrio she finally got a positive pregnancy result and joined the CF maternal health clinic. Emilia said: “I had always wanted children and I found out I was pregnant on Boxing Day, what a gift! My pregnancy was totally textbook, and Jesse is now healthy and thriving at 10 weeks old. The clinics at Royal Brompton worked really well and it was lovely meeting other new mums in the same position as me, we could share advice and compare notes. I can’t thank the team at Brompton enough for ensuring I was able to have the delivery I wanted near to home.”

The clinic has recently been awarded funding from the King's Health Partners Cardiovascular and Respiratory Clinical Academic Innovation Fund to continue to improve patient care. Dr Felton and her team are also now in the process of writing guidelines for other healthcare professional on how to care for pregnant women with CF. Emilia is assisting to ensure patients’ voices are included.