Being Diagnosed With CF and CF-Related Infertility at the Same Time

At the age of 30, I faced the difficult reality of a conclusive cystic fibrosis diagnosis and the CF-related infertility that came with it. Although I experienced a lot of guilt as my wife and I built our family and I hated seeing her suffer because of my disease, our journey with in-vitro fertilization (IVF) proves that you can be a father despite living with CF.

| 6 min read
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Austin Stanley
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In 2015, things were going pretty well. I had just turned 30, been promoted at work, moved from Kansas City, Mo., to Chicago, and celebrated five years of marriage with my amazing wife. We felt the time was right to start a family.

After a few failed attempts to get pregnant the natural way, I decided to go to a urologist, who looked at my medical history and pushed for additional testing. Within weeks, I was not only given a conclusive CF diagnosis, but my wife and I learned that nearly 98 percent of men with cystic fibrosis are infertile.

Like many other men with CF, I was born with congenital bilateral absence of the vas deferens (CBAVD), which prevents the semen from making it into the sperm and causes infertility. However, advancements in fertility treatments have made it possible for men with CF to have biological children through in-vitro fertilization (IVF). My wife and I accepted this news in stride, and although we didn't know much about becoming a parent with CF or going through IVF, we did our best to prepare for all the unknown obstacles ahead.

As we gathered more information, we soon learned our health insurance did not cover fertility treatments and that we would have to pay for the IVF procedure out of pocket. While costs can vary, one round of IVF came out to be about $17,000 in our case. The cost was daunting, but it was a chance we were willing to take.

Our next step was to meet with our doctor to discuss what going through IVF would mean for us. My wife was 28 at the time and in excellent health. Despite this, there was only about a 50 percent chance of success, with the caveat that the chance of success could be even lower in our case because of my CF mutations.

When our doctor explained the physical and emotional toll the process would take on my wife, I looked over expecting to see the same look of worry and fear on her face that I had on mine. But instead, I saw her remarkable strength. She did not break eye contact with the doctor, fully engaged and listening carefully as she tried to absorb every ounce of information.

In that moment, a wave of guilt came over me that I still carry with me today. I knew that I would not let this break her and that I would be her strength if she felt weak. But somehow, that didn't seem like enough. I wanted to lift this burden off her shoulders entirely.

During our first round of IVF, I stood by as my wife endured the physical and emotional strains associated with the months-long process. When we learned that our first try was unsuccessful, I watched my wife's strength fade and I felt helpless, wishing there was more I could do. The immense guilt I experienced multiplied each day, feeling that it was my fault she had to go through this. I was fine having to deal with my CF, but seeing it impact her life was hard. We did our best to stay positive, but when our second round of IVF also failed, our initial determination was replaced with total devastation.

We decided to take a break and reset after an intense few months. After talking things over, we decided to give IVF one more try and agreed that we would pursue other options for starting a family if the third attempt didn't work. People often say the third time's the charm, and in this case, it definitely was. The trials and tribulations were not easy, but unquestionably worth it. Being parents to our twins, Liam and London, has been a blessing that we never take for granted.

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One of the most difficult things about this process was the lack of support. We did not know anyone else with CF who had started a family, and we felt very alone during the process. Although we had each other, knowing that someone else understood how we felt or hearing a success story from another person with CF dealing with IVF would have been a huge inspiration during those incredibly trying times.

Having learned more from our experience, I would recommend reaching out to your local chapter to see if there is anyone going through something similar or to join CF Peer Connect. I would advise you to work with your CF care team to learn about any potential resources available. Our fertility center was also key resource for us, especially when it came to finding programs that could help with the cost.

For any other men with CF planning to start a family, the process will be grueling, and you may feel guilty. IVF and becoming a parent evoked so many new feelings for me regarding my disease. The guilt I mentioned was replaced by joy when we learned we were expecting twins. But, that joy was quickly replaced by feelings of worry and a general fear about CF that was completely new for me. The “what-ifs” kicked in and the severity of what I was up against flooded over me. I realized I needed to live and be there for my children and my wife. I had spent a lot of time distancing myself from the disease, and I could no longer afford to do so. I don't want my time as a father to be limited and I work hard to keep as much time on the clock as possible.

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Even though it is hard to think of yourself as you build a family, you must make your health a priority and take care of yourself -- even during the stressful times. I hope that our story can encourage someone else who is considering starting a family or who is currently going through this to not give up by showing that it is possible … you can become a father despite living with cystic fibrosis.

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Fertility and Reproductive Health
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Austin is an adult living with cystic fibrosis. Born and raised in Kansas City, Mo., Austin earned a Bachelor of Science degree in public relations in 2008 from the University of Central Missouri. Austin now resides in Phoenix and works as a leader within the claims operation of a major insurance carrier. He and his wife, Diane, are the proud parents of twins, London and Liam.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.