After two and half years of not being able to conceive and a battery of tests and then more tests, we found the cause of our infertility. We were told that my husband had cystic fibrosis (CF). We had no idea what this meant or how could he have just received this diagnosis at age 38! Despite not fully understanding the implications of the diagnosis, there was one thing we did understand – we would, without a doubt, need in vitro fertilization (IVF) to conceive a child. You see, my husband’s semen contains no sperm. None, whatsoever.

The Cystic Fibrosis Diagnosis

What we now know is that there are varying degrees of cystic fibrosis. My husband has what is considered to be a mild form but there’s a whole spectrum of symptoms depending on the mutation of the gene. Cystic fibrosis is a genetic disorder and it is estimated that one in every 25 people carry a gene mutation for CF. A carrier will display no symptoms because they will have a second gene (one from each parent), that is normal. For a person to actually have cystic fibrosis, both genes must have the mutation, which means both parents were carriers and in most cases – never knew. Luckily, I have been tested and I am not a carrier.

Cystic Fibrosis and Male Infertility

The staggering statistic is that 97-98 percent of men with cystic fibrosis, will be infertile. This basically guarantees that as a man if you have CF, then you will most likely need assisted reproductive technology to conceive a biological child. And yet, the awareness around this is so poor – we just had no idea it was possible and if it hadn’t have been for us trying to get pregnant, we may never have known. In the majority of cases, infertility is caused by a congenital bilateral absence of the vas deferens (CBAVD). The vas deferens are the tubes which link the testicles to the urethra. If the vas deferens are missing, the sperm are effectively trapped inside the testicles with no way to get into the penis and the result is that the person cannot naturally father children.

Our Experience with Cystic Fibrosis & Male Infertility

Bypassing CAVD With Surgical Sperm Retrieval

What the doctors told us, is that normally the sperm are present, they just can’t get out, so they can use a technique called a surgical sperm retrieval to physically go in and remove them. My husband and I were really pleased that there were indeed sperm to retrieve and that they managed to get aspirate 3 test tubes. This is the difference between infertility (in our case) and someone who is sterile – which would mean that the sperm were not present at all.

Our IVF Requires ICSI Fertilization

Because the sperm are frozen, the assisted conception technique they use for fertilization has to be intracytoplasmic sperm injection (ICSI). This means that after egg collection, they defrost some of the sperm and then try to pick the one which looks the healthiest. They chop its tail off and insert it directly into the egg. Only one good quality sperm is needed and rather than leaving it to chance that a sperm will find the egg in the petri dish as in regular IVF. So far we have undergone three rounds of ICSI, all of which have failed. My egg quality is not great and it took a while to get the right drug combination that I responded to. We are going to keep trying though; I still find it amazing that science can help us bypass this problem.

Dealing with A Chronic Illness & Infertility

We are not just navigating infertility, we are also navigating life with a chronic illness along with infertility. As well as going through fertility treatments, we now have to go to our local hospital every six months to the cystic fibrosis clinic for my husband’s check-up. Cystic fibrosis in general causes the body to produce thick mucus, which affects the lungs and digestive system in particular. He sees a nutritionist and dietitian who all keep their eye on his physical health; we are lucky to have this provision so close to us. The team is fantastic and always want to hear about our infertility journey, encouraging us with success stories from other patients. Although my husband is asymptomatic in that other than the infertility he shows no symptoms, we know that as he gets older it is likely that he will need additional medical interventions. For example, chest infections can be incredibly serious in CF sufferers. For now, though, we are concentrating on our dream to be parents and we hope it will be fourth time lucky for us.