When I look at my brilliant blue-eyed baby boy Lucas, I can barely believe my luck.
Only a few years ago I had resigned myself to never having children of my own and my husband Charlie and I were considering adoption – although my prognosis back then might have meant that wouldn’t have been a viable option.
You see, I have cystic fibrosis (CF) – a genetic condition affecting nearly 11,000 people in the UK which has historically carried an average life expectancy of just 31. It means that sticky mucus builds up in my lungs and digestive system, leading to many issues such as lung infections, poor lung function and problems digesting my food.
But having CF has always been my normal. As a child, I lived a very medicalised life. I’d need 40 tablets each day with food, did physio twice a day and, while everyone else sat on the sofa, I’d have to lie on the couch upside down to help clear my airways.
I remember telling people when I was younger that I was only expected to live until 31. Now that I'm older I always think how profoundly sad that awful prognosis would have been to hear.
I had friends pass away very young and others so unwell they needed lung transplants. As hard as it was to go through, for me it was just part of having CF.
From an early age, I was determined to live into my 40s or 50s. It was a very bold ambition. I guess I was stubborn and hoped my life would last as long as everybody else’s.
But once I hit my teens my health started deteriorating and I was in hospital much more, battling lung infections and needing intravenous antibiotics. My lung function was falling – at times dropping to around 40 per cent - and I couldn’t help but think, how long have I got left?
I was 25 when I met Charlie. From the start I was very honest about what being with me could look like for him. I was getting worse and worse, contracting frequent infections, and the thought of children was always on my mind. I knew my chance of getting pregnant was becoming a distant possibility, and that if we wanted children, it would need to be sooner rather than later due to my declining health. I was also terrified of the idea of not being around to see my children grow up.
In 2018 things took a turn for the worse. I contracted NTM (nontuberculosis mycobacteria) – one of the notionally bad infections for someone with CF. There is no real way to get rid of it – the only treatment is strong antibiotics to try to control it. It can take many years to go, if at all.
While on the drugs you’re not eligible for a transplant. Having CF, a transplant always felt like an inevitability once things got really bad – a last resort in terms of treatment. Knowing I wouldn’t be eligible for one was so scary.
Worse still, the antibiotics weren’t safe to take during pregnancy. That was the catalyst for us thinking about adoption – it seemed like the only option for us to become parents.
It was incredibly hard to get my head around not having my own children. You have a vision of how your life will be, then you realise it might not happen. I felt so sad and guilty – guilty for Charlie not having the life he would want, and for not being able to give my parents grandchildren.
Then everything changed.
It was 2020, and I was at rock bottom – I’d been in hospital for three weeks during Covid, my chest was really bad, I’d lost a huge amount of weight and I’d developed a form of heart failure due to my treatment.
But an amazing thing happened during that hospital stay. A new drug, Kaftrio, which was meant to dramatically improve the health of people with CF and add decades to their lives, had received FDA approval. It was a glimmer of hope during a very dark time.
On the day we were meant to get married but had to postpone it thanks to Covid, I got a call from a nurse telling me I was about to start Kaftrio. If anything, this was better than a wedding. It felt like fate – it was always meant to be a meaningful day.
I felt so incredibly fortunate to try the drug, I was just hoping against hope that it worked.
Thanks to Kaftrio my health stabilised – my lung function increased to around 60 per cent, I could gain weight and simple things which had always been a struggle, such as changing bedding and climbing the stairs, became easy. I used to cough all the time but that disappeared.
I could again consider having a child because my health had improved. I came off the antibiotics for three months to check I remained stable once the drugs had left my system as I still had NTM. Then we could finally start trying for a baby.
When I found out I was pregnant in March 2022 I was over the moon and shocked, because I wasn’t sure my body would even be capable of it.
I had endless appointments and scans, under the care of a new CF antenatal clinic at Royal Brompton Hospital, the first one of its kind. There had never been a need for it before Kaftrio but the team there told me how pregnancies had tripled among women with CF since the treatment became available.
Lucas was born last November and he’s changed my life. He’s great and I feel very privileged to have him. Having a baby is what I’d always hoped for and having Lucas is a dream come true. My parents were so happy to become grandparents – they’d never wanted more for me.
It’s not always easy and it can be a juggle having CF and a baby to look after. It’s a fascinating experience when all I’ve focused on before is my health and wellbeing. Now he’s my absolute focus and I just want to be as healthy as possible, and here for as long as possible, for him.
I’m very close to my brother and sister so it would be wonderful to give Lucas a sibling one day.
I don’t know how long I will be around for but I feel cautiously optimistic.
I still find the way my life has been transformed in the last few years quite amazing. I’m so thankful to have had Kaftrio and the baby I’ve always longed for.