Our Son Can Not Have Children
It was after our son's second hernia repair surgery that it was confirmed. The nurse came out to the waiting area (not good) and requested to speak with the parents of the 4-year-old boy who just made it to recovery (not good at all). My husband and I walked back, both of us trying to not freak out. "You can have a seat in this little room and the doctor will be right in to talk to you," she said. Not good not good not good. We sat down, avoiding each other's eyes because of fear we would each start crying.
Anytime you send your child back you are, for sure, going to worry. No matter the reason for the surgery. This was a routine hernia repair and he had had one before about a year previous. It was supposed to be quick and we would be able to see him as soon as it was over. The doctor walked in, sat down, and said nothing for what felt like forever.
Finally, he said "I don't know how to say this. During surgery, I didn't see where your son has a vas deferens. Do you know what that is?"
CBAVD and CF
Let's back up for a second for a quick anatomy lesson. A vas (ductus) deferens is, in simple terms, a tube that carries the sperm from the testicle to the urethra. Without a vas deferens, sperm cannot be moved to where it needs to be mixed with semen. Men with CBAVD (congenital bilateral absence of the vas deferens) are considered infertile and need assistance with fathering children.
It is the gene mutation of the CF gene that causes CBAVD. It causes atrophy of the vas deferens during the development of the embryo. Most men with CF can produce sperm normally and are not sterile. It is CBAVD that prevents an unfertilized egg.
When the doctor told us that he did not see a vas deferens, we sat there for a second. Not from shock so much as sadness. This was something we expected, but hearing it made it final. "Oh. Well, we kind of expected this" I told him. "This is something that I hate confirming for parents," he said.
We felt heartbroken in the moment but, at the same time, relieved. Parents and family members have heard earth-shattering news in that small room we were in that day. While our own news was not what a parent wants to hear, we knew we could deal with it.
My son's future
Expecting to hear this and knowing it is true felt so different to me. My son can't have children on his own. There is such a disappointment that comes with knowing for sure. Disappointment for him and whomever he chooses to have a family with. Would he be able to have children at all? Would this be an issue with his wife? How will he take the news when he finds out?
As a caregiver, you worry about the future constantly. Knowing that the person you love with CF will have issues with something else, especially something as wonderful as becoming a parent, is tough. This was ANOTHER obstacle he would have to face in his life. As his parents, we want to make all of this as easy for him as we can and this is not something that we can help out with. It is a very heartbreaking position to be in.
We will do everything that we can, though, which is to love and support him. This is not information that he is aware of and we won't sit him down to tell him for quite some time. When we do, we will be there for him without a shadow of a doubt.
Do you or your loved one with CF have CBAVD? How does it affect you or them?
Have you (or a loved one) been experiencing any negative side effects from Trikafta?