For Men’s Health Week 2025, I wanted to share our fertility journey. I don’t think many people expect that they will ever need to use fertility services. That certainly was the case for my wife and I; we had conceived our first two children without too much trouble. Tavish, our son, was born in early 2017, and Cecilia, our daughter, in late 2018, albeit a month early, although in hindsight the enthusiasm is very on brand for her. We were looking forward to a near future where we would complete our family of five, like we had always dreamed.
Shortly after Cecilia was born, we missed a call from our midwife. She left a message saying something had come up on the Guthrie test, but she couldn’t explain it over the phone and would have to meet us in person. It would need to wait until the next week however, as she was away for the weekend.
And what an agonising weekend that was. The Guthrie test, or heel prick test, is a test performed on newborns to screen for rare but serious metabolic disorders. We spent the next few days reading everything we could about these disorders and fretting about what the test would show, hoping that it was something mild and not something that would have a significant impact on our newborn daughter’s quality of life.
Unfortunately, it would be the latter. We met with our midwife, and she confirmed our daughter had tested positive for at least one gene mutation which causes Cystic Fibrosis. Further genetic testing over the next few months would confirm that she had the condition.
Cystic Fibrosis affects the lungs and digestive system. Once upon a time it would mean a likely life expectancy of only around 30 years, however significant medical advances have meant that, although not cured, this has been substantially improved. That said, there are many different gene mutations which can cause Cystic Fibrosis, and as such the severity of the condition and its impact can vary greatly. For Cecilia, we just didn’t know what impact it would have on her life.
Cystic Fibrosis is an inherited genetic condition. If both your parents carry a Cystic Fibrosis gene mutation, you have a one-in-four chance of inheriting both of these and having Cystic Fibrosis yourself. However, as it requires these genes to be inherited from both parents, many people can carry a single gene mutation and never know it. In our son Tavish’s case, nothing had shown up on his Guthrie Test, meaning it was likely he hadn’t inherited the genes from either of us, so we had no suggestion up until that point that we were carriers of a gene mutation ourselves.
Now armed with this knowledge, it raised some serious questions for me and my wife about having a third child and completing our family. Leaving things to chance, the risk was just too high that they too would have Cystic Fibrosis. Not only is it dangerous for people with Cystic Fibrosis to be around one another due to the risk that bacteria in the lungs can be transferred, we were also expecting our daughter to need extra support from us for the clinical appointments that would be a regular part of our routine for the rest of her life.
Very fortunately, we had the option of accessing Preimplantation Genetic Diagnosis (PGD). PGD begins with a process similar to In vitro Fertilisation (IVF), whereby eggs are fertilised in virto to create embryos. These embryos can then be tested before implantation to make sure that they do not carry a specific genetic condition, which in our case was Cystic Fibrosis. Embryos which do not have the condition can then be implanted.
In 2021, we were referred to a fertility clinic to begin PGD. The process was explained to us, we received genetic counselling, and were talked through the various consent forms. It is fair to say that I was particularly familiar with the process prior to arriving at the fertility clinic, however what I hadn’t fully appreciated is how small my role was going to be throughout the whole experience.
While the collection of sperm is a straightforward process, the collection of eggs is less so. For two weeks, my wife self-administered daily injections to promote egg development, followed by a final injection to trigger egg release, ready for collection two days later. The egg retrieval itself is an involved process, carried out under local anaesthetic. Throughout all of this I felt thoroughly useless, doing my best to support my wife as she did all the hard work.
Twenty-one eggs were collected and fertilised, which eventually resulted in five embryos. These were sent away to Christchurch for genetic testing. The wait for results must have only been about two weeks, but I remember it feeling much longer. Eventually we learned that, out of the five embryos, three did not have Cystic Fibrosis and could be implanted.
Three embryos felt like quite a lot, and I assumed that, because all of the conditions were so tightly controlled, that the odds of success would be higher than natural conception. Sadly, that was not to be the case, as none of those embryos successfully implanted.
This feels silly to write down, but I also didn’t expect the experience to be so clinical. With our first two children, if we didn’t successfully conceive that month, we could just keep trying almost immediately. With IVF, as soon as we knew an embryo hadn’t implanted, we would notify the clinic to let them know that we were ready to try again as soon as possible. However, we would often then have to wait for another month or two, as clinic space was not available. I appreciate that the reason clinic space is not available is because other people were going through the process, which is in high demand. However, moving from something which previously felt spontaneous to a process so heavily scheduled was jarring.
Don’t get me wrong though, I recognise how fortunate we had been to be able to conceive two children naturally, and again how fortunate we were to be able to access something like PGD in New Zealand. The prospect of going through the entire cycle again felt daunting though.
As with the first cycle, my wife again went through a routine of daily injections, followed by egg retrieval. My only part in this process occurred maybe five minutes before she was due to be anaesthetised, where I was ushered into a room with a small cup in hand, an experience which further reinforced the clinical nature of everything. Eggs were again fertilised, and embryos sent off for analysis, this time returning five which could be implanted, and two with Cystic Fibrosis.
As it turned out, the first embryo was successful this time, and in late 2022, our third and final child, Tarn, was born.
I feel we have been extremely fortunate, as I know many people have had vastly different experiences with their fertility journey. I am grateful to all of the staff at the fertility clinic who were nothing but professional. However, it wasn’t until I started talking to other people who had been through the experience themselves that I realised how important it is to be able to share experiences of what can be a really difficult and confronting time in our lives.
As for Cecilia, thanks to the advocacy of groups like Cystic Fibrosis New Zealand, she has access to publicly funded drugs which are nothing short of incredible.
