The Road Less Travelled: Being a Dad with Cystic Fibrosis

Born in 1971, 51-year-old Tim Wotton lives with cystic fibrosis (CF) and CF-related diabetes and still has his original lungs. Living near Wimbledon, he works full-time as a communications specialist.

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My journey to becoming a parent was not an obvious and expected one. I never had any complacency about my length of life or took anything for granted. In my 20s, I never thought I'd live long enough to have a wife and child.

Marrying Katie in 2003 spurred me to believe that my destiny might be different than I initially thought. I did have serious concerns about starting a family when there was no certainty of being alive for them. Still, I was feeling healthy enough, so it seemed a natural way to keep on defying my illness.

When so much of  CF life is not normal, it's fulfilling to do something that your peers take for granted and will break the CF boundaries.

We took “the road less travelled” to make it happen

Due to my CF, we had to undergo In Vitro Fertilisation (IVF). The experience was an emotional rollercoaster; drawn-out, cruel, torturous, and expensive.

Three difficult years later, we got lucky on our sixth IVF cycle. In May 2007, we had our miracle boy - Felix.

It felt amazing and slightly surreal that I could produce a healthy child after a lifetime of suffering.

Taking care of the both of us

How would I look after my son and take care of myself at the same time? Nothing can prepare you for being a parent, especially making the adjustments when there are health problems to factor in.

Emotionally, I hid CF away during my initial years as a parent. I didn't stop any of my treatments; I just never complained or talked about my CF. It seemed less important than the enormity of first-time parenting. Katie took the brunt of the early morning wake-ups and other activities to help me preserve my energy levels. This, in turn, stretched us as a couple.

I took on this new challenge in month-long blocks. I'd focus on getting through June, and then I'd take on July, etc.

I thought this was better than projecting too far into the future and causing myself too much anxiety.

Facing unique parenting challenges

My biggest challenge as a parent is overcoming my primary instinct to maintain my health. I've systematically built up this survival trait over the years - but parenting can often involve situations that mean I must put my health second - especially early on.

At the same time, being a parent while managing my extensive daily CF regimen can be punishing. It's at odds with always being able to play my part in parental duties.

Katie has often felt like a one-person family in my absences during my treatment regimen - especially when I need to go away for some treatments.

I had more to consider as a parent with CF than other parents. As I said before, sometimes I had to go against my instincts and put my health second. There was the extra tiredness to contend with, for example, alongside the increased risk of infection and exposure to the elements when I took Felix out of the house.

I’ve had to miss out on some “life moments” other parents take for granted

More so than most parents, I'm aware of the risks of being too close to Felix when he has the sniffles. As harsh as it sounds, I shield myself by not kissing him at these times. I certainly do not share his eating utensils, cups and food. One example of my desire to protect myself from cross-infection is that I will never eat the same ice cream as him. I see so many parents doing this without a second thought.

I miss out on particular life moments with him, but common sense has to prevail. I wouldn't be happy with myself if I let my guard down and subsequently got a cold from him, which could deteriorate my health. I am delighted to be his dad, but it comes with certain limitations.

Generally, I do as much as I can. I act like any typical dad when I'm running around with Felix, which I know he appreciates. One special bond is our love of sports. Indeed, we now play field hockey for the same team on Saturdays in London, which is magical.

I don’t hide my illness from my son

I was always inclusive with Felix about my CF. I didn't hide my illness from him and he has always seen me go through my CF treatment regimen and has heard me coughing.

As he's gotten older, we’ve chatted about my health, and I know he's concerned about not always having me around. He's also super proud of my published memoir, "How Have I Cheated Death?” (2014), which he’s taken to school to show his teachers and friends. I even presented at his primary school about creative writing and becoming an author.

The bond of love is strong. When the lockdown commenced in March 2020, I had to leave my wife and son in London. I shielded away with my mum in Southampton for over five months, as Katie is a nurse and could have brought COVID-19 home. It was a very challenging time not seeing Katie and Felix and not knowing when I could safely return home to my family.

We all had to believe we would be united again, and our deep love got us through this horrendous time.

Being a father comes with many rewards. When I'm having a dark CF moment, Felix has the knack for taking my mind off it. His acts of kindness and compassion help to inspire me to keep fighting my wretched illness.

He is a valuable distraction, stopping me from dwelling too long on my personal health battle. Indeed, I only need to look into his eyes to see all my tomorrows.

I initially thought that the rigours of parenting would mean my health would only hold out enough to get him started in life. Nowadays, however, the thought of not being there for Felix feels abhorrent. Becoming a husband and a father has given me extra motivation to keep going for as long as possible.

The takeaway

Felix and I have both broken the mould in our lives. I've stayed in this world and have been able to live a longer, fuller life. Felix was able to come into the world because of this.

He's the best of me, my lasting legacy; the final piece of my jigsaw. He's someone I fully intend to see grow up and have his own family.

NPS-IE-NP-00713 March 2023