Ty's Perspective on the Moment We Found Out He Is Also a CF Carrier



I watched Holly end her phone call. She turned toward me, and as she tried to tell me, tears welled up in her eyes and her voice began to shake:
“You’re a carrier, too.”

I did not think we would even get to this point. We did not really know much about cystic fibrosis yet. After Holly was tested positive as a carrier, I still was not worried and just assumed I would test negative and we would move on with life, enjoying the pregnancy and preparing for our first child. I really had not worried that I would test positive and that we would have to prepare for the chance, 25-percent to be exact, that our child would have a genetic disease.


But in that moment Holly told me that I was also a carrier life changed. I did not have the faintest idea of how this would affect our lives – just that it would. And drastically.


One of my first reactions was to try to comfort Holly, partly because I was in shock, and I still had no idea what any of it meant. Holly, being the what-if-scenario person she is, knew more than I did about CF because she had done some research and I think she was feeling the gravity of it all more deeply than I was even able.

I do know that I was able to grasp, fairly quickly, that this would alter future family planning. And I also knew that in that moment, whether this child would have CF or not, any time we decided to have a child, there would be a 25-percent risk.

This felt incredibly unfair. 

My heart sank, and I could not help but be angry. 

Here we were, expecting our first child and preparing for something we had both always wanted, and now we are faced with worrying about Holly ever becoming pregnant again. 

I was thinking: “Why are we facing this now? Why do we have to worry about this?” There was a profound realization that we, nor any of us, are in as much control of our futures as we often assume.

Though I do not consider myself an optimist (I usually lean toward pessimism and call it being “realistic”), I verbalized for Holly and myself, that it was still more likely that our child would not have this disease. There was a one-in-four chance our child would have CF now, but a three-in-four chance the baby would not. 

At that time, maybe partly for emotional survival and attempting to comfort my wife, I really liked those chances.

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