“Daddy, will you turn up the TV for us please?” This is a common question at my house. My kids ask me this because the vibrating sounds of my vest and nebulizer always compete with their cartoons. Of course I'm always glad to help and reply with a “Sure!” that sounds more like a “Ssshhh-uuu-rrr-e!” because my whole body is vibrating. As ordinary as this routine may sound, however, it and a million others like it almost never happened.
It is a known fact that most men with cystic fibrosis have fertility issues. I first heard about male infertility due to CF around age 14 during a clinic visit. I didn't fully understand exactly what that meant in those days, but for a young teenage boy the news that I might not be able to have children was like being told that I could never go to the moon. An inability to have kids was just not a concern for me at that point in my life. But there was a day coming when this news would matter to me.
My wife, Misty, and I met in college. From day one of our relationship, she was aware that I have CF. Very early on into our dating, I also told her about my possible fertility issues. I had always been concerned that my possible infertility would be an issue in my relationships, but I was glad to discover that Misty did not see this as an issue at all. We married, and years later she (really, we) wanted to start a family.
We began asking questions at the CF clinic regarding our ability to have children. With each question we asked, I was haunted by my recollection of the clinic visit I had when I was 14. The day had finally come when the thought of not being able to have children was heart-shattering.
In an effort to be sure that we had exhausted all our family planning options, we began to investigate possible next steps. Misty had no known reproductive issues, so I went to see a urologist. We learned that I have a condition called congenital bilateral absence of the vas deferens (CBAVD), which, as I mentioned, is common in males with CF and causes infertility. But this is also where we learned something new and something that was promising: Although I was officially unable to have children through natural means, this condition did not mean that I was sterile. The urologist explained that I had plenty of sperm (what was actually said was that I could populate a small country), but the sperm had no means of getting out. According to the urologist, I needed a simple surgery to retrieve the necessary sperm. Even though a surgery that involved cutting a testicle didn't sound so simple to me, the surgery went well and my recovery was short. This procedure, coupled with our newfound knowledge, paved the way for my wife to undergo In vitro fertilization (IVF).
I was blown away that the impossibility of me having children was now possible. But sadly, our first round of IVF was unsuccessful. We were encouraged by our IVF doctor to try again, and with the generous financial support of a couple from our church we did a second round of IVF four months later. While Misty and I were at a Phase 3 Cayston® study day check-up, we received the call from her nurse -- we had a positive pregnancy test! My firstborn son, Nathan, arrived without incident nine months later, followed by our twins, Charis and Jonas, four years later.
I want to share my journey toward becoming a parent who has CF in the hopes of encouraging others who also have CF who, despite aspiring to one day be parents themselves, may have heard that it isn't possible. I hope that parents of children with CF are also encouraged by my story. We all strive not to let CF prevent us from living life to the fullest, and my life is certainly full as a husband and a father to my three children.