This Week for Cystic fibrosis 'CF' week Laura shares her experience as one of the select few women who participated in the groundbreaking cystic fibrosis (CF) maternal health clinic at Royal Brompton Hospitals, the first of its kind.

Being under the care of the Royal Brompton for over a decade, ever since I relocated to London, has deeply shaped my journey. In 2019, I encountered NTM, a particular challenge for individuals with CF, specifically Mycobacterium abscessus. The treatment was tough, involving five different antibiotics with many risks. One of the risks were that it was not safe to use while trying to conceive or during pregnancy. Therefore, a major part of our conversation revolved around the implications of discontinuing these essential medications that help maintain my health.

Once treatment began, conversations about starting a family naturally came up. At the time, I was in my late twenties and in a committed relationship, so it was an important topic for us. Luckily, I've always been able to have open and honest talks with my medical team. They knew I was interested in exploring family planning, so finding the necessary resources was straightforward because it stemmed from those existing conversations.

Having a child was never a definite for us, in fact, my husband and I had accepted that it probably wouldn't happen. We had even started speaking to adoption agencies. That changed when the Royal Brompton Hospital decided to run a dedicated cystic fibrosis (CF) maternal health clinic, RBH Charity supported a unique fellowship in CF reproduction and maternal health to expand this dedicated service.

After many conversations with Dr Imogen Felton and her team, the process began with a collaboration between Royal Brompton and Chelsea and Westminster hospitals for my maternal appointments. While I may have been among the first to undergo this experience, I'm grateful it wasn't a complete trial run. Living with CF often involves being a test subject, so it was a relief that I didn’t have to put my baby through that. In March 2022, I found out I was pregnant. After four years of preparation, the sheer joy of finally conceiving was beyond words.

During my pregnancy, I had regular consultations and found incredible support through online communities like the Facebook group Trikaft. Connecting with other women with CF who had children was invaluable, even though there weren't many studies available due to the newness of it all. My pregnancy was a mix of challenges and awe. My body didn’t always cooperate due to CF, but carrying Lucas made me appreciate its capabilities in a whole new way. Despite my anxieties, I stayed active, even running up until 34 weeks.

 

Towards the end of my pregnancy, I was 10 days past my due date, and the induction process was challenging. Dealing with constant sickness, I relied on antiemetics throughout. However, the moment I gave birth to my gorgeous baby boy, who is now a year and a half old, all the hardships faded away. It's been an amazing journey, brimming with joy and the inevitable adjustments that come with parenthood. Since having Lucas, I’ve had to juggle a lot. I breastfed for a few months, but at 12 weeks, I needed to resume my NTM treatment, which meant spending 10 difficult days in the hospital. My husband took time off to care for Lucas, which was a blessing. One antibiotic was a nebulizer that Lucas couldn’t be around, so I had to time treatments around his unpredictable naps. Managing appointments and IV treatments at home, while also caring for Lucas, was a constant challenge. The whole experience was filled with anticipation and anxiety, but I felt incredibly supported every step of the way. Looking back, I feel so grateful for the amazing support system and the incredible journey of becoming a mother.

 

Dr Imogen, who head  of the Cf maternal clinic, is an absolute rockstar, incredible and passionate about advancing the service to make it suitable for patients. While I might have managed with other services, the unknowns of pregnancy and CF would have made it very stressful. Working with a midwifery team or obstetricians unfamiliar with CF would have been tough. Imagine being a midwife and seeing my drug list—it would be terrifying.Having Rebecca Scott at Chelsea and Westminster as a brilliant point person was invaluable. We had monthly virtual calls and knowing that Imogen and Rebecca were representing both my CF and maternal care made a huge difference.

 

My pregnancy journey wasn't a smooth ride, but it was an extraordinary privilege. I feel deeply blessed to have had access to the care and support that brought my son into this world. I can't express enough gratitude to everyone who walked alongside me on this remarkable journey.

Supporting patients at our hospitals, by providing state-of-the-art equipment, new facilities and supporting cutting-edge research is critical for heart and lung patients. If you'd like to support funding for critical research that helps patients like Laura please click the link to donate. 

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