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Ben's Story

I am a man with PCD and I am the proud father of two wonderful children.

My lung health has always been generally okay, so until we decided to try for children I mostly experienced PCD as sinus symptoms and chest physio. But for about eight years of my adult life, fertility issues far eclipsed this as the main facet of having PCD.

I know there’s a lot of PCD patents whose experience I can’t speak for. This especially includes women with PCD, but even those men whose different genetic makeup might mean they have different outcomes to me, or who choose a different path to make a family. But this is my own story.

I was lucky to be diagnosed very early and to have well-informed, communicative parents. As a result, I got a good grounding in what to expect. I don’t remember a time before I learned about genetic inheritance patterns! As a child and teenager through the 90s and 00s, I was told to expect a 50/50 chance that I could have kids, and that maybe I’d need to have IVF or adopt. And there was never any negativity or sadness shown to me about any of these options.

Maybe it became so normal to me that I forgot to worry about it. Later on, I wished that I’d made the effort to learn about the motility of my own sperm earlier than I did. I had waited until the pressure was on, and a concerned partner was by my side, before getting the news that my sperm were all completely immotile – or ‘asthenozoospermic’, if you want to win at scrabble. I thought, maybe we would have made different life choices if we had known sooner… But on further reflection, maybe I’m glad I didn’t have ‘I am infertile’ hanging over me, until I needed to know.

Either way, because we had known this risk came with PCD, we were still lucky compared to many others. Because I got checked out as soon as we started trying for a baby, we skipped months and months of the heart-breaking trying-and-failing process which many people experience before they get a diagnosis of infertility. And we felt like we were front of the queue at the fertility clinic, due to arriving as a referral from my PCD consultant.

Fertility clinics often seemed quite grateful for how straightforward our case was due to PCD. It’s quite unusual to have a solid, established cause of infertility from the outset. I loved how ready they were to read the research papers I found, and try things like shooting lasers at sperm, as Japanese PCD researchers did. ‘We’ll write a paper on it!’ they said.

But for the most part, our story then stopped being a PCD story and became ‘just another’ IVF story. We spent lots of our money and time and emotional energy on trying to make that work.

Most times, it didn’t work. That was hard. A couple of times it did work for a while, but then it didn’t work after all. Those times were much harder.

This was the first time I felt, as an adult, that my PCD was having a really big impact on the people around me. IVF felt inescapably more difficult and involved for the female partner. As an infertile male it would be easy to feel helpless, or to blame. But my wife was absolutely incredible throughout. I didn’t think she could ever show me more strength and courage than she showed during those six years, but then came childbirth…!

Before we got to that amazing moment, our story also became a donor conception story. Maybe it would eventually have worked if we had kept trying with my own sperm, but after a number of years we reached our own tipping point. Starting a family soon felt more important than worrying about whose gametes ended up making the baby.

Maybe using donor sperm made all the difference. We’ll never know. But I do know the next round of IVF worked, and I don’t for a minute regret it. They are the most beautiful and rewarding little sleep-stealers, and I feel endlessly fortunate to be their dad. From this incredibly fortunate vantage point, infertility is now just a memory. No more part of my identity than, say, a shirt I used to wear. Back to the sinus issues, and the chest physio… gratefully!


- names have been changed to protect identity of the writer