Becoming Mom: My Path to CF Motherhood (Part 1)
I distinctly remember the day I realized cystic fibrosis was the reason I wouldn’t go through pregnancy and become a mom.
Crushing realization about motherhood
This realization came as a result of a summer CF “tune-up” in middle school where curiosity led me to check out a book about cystic fibrosis from the hospital library. In that book, a section about reproduction detailed how few women with CF reached childbearing age.
Even then, the author went on to say most women with cystic fibrosis were not healthy enough to carry a pregnancy or care for children as their health declined. I was stunned and so confused. How could this be? And just as the color drained from my face, the words drained the idealistic and naive thoughts I had about my future.
An unrelentless sadness grew inside me as I closed the book.
Receiving valuable advice
During that same admission, I was scheduled to meet my pediatric CF doctor to have a talk about “growing-up” as a step in the transition from pediatric to adult care. It was something he did with all his patients around puberty to discuss how CF would affect college, career choices, relationships, and family life. Looking back, I realize how progressive this approach was, and I am so thankful we had the ability to have this conversation.
I listened intently for any kind of clarity he could offer me about what the future would look like. When we approached the subject of children, my ears perked up. He explained how it wasn’t very common for women with CF to be mothers yet, but it was possible. It was best to have a planned pregnancy at a time when I was the absolute healthiest. He detailed how a pregnancy could affect my lungs and weight, and how much work taking care of myself, my cystic fibrosis, and a baby would be. And then he said to me:
"One day you can become a mom, but you are going to have to work very hard for it. If you work your hardest to keep your body healthy, that will give you the best chance of having children. I'll be honest with you, having a baby when you have CF is like training for a marathon and the training needs to start now. Take care of yourself now, so you can do what you want later.”
With a shaky voice I responded, “OK. I can do that.”
At twelve years old, I held the responsibility of planning a pregnancy that was more than a decade away. Obviously, that is a significant amount of pressure for a pre-teen who doesn’t even have braces yet and barely weighs 70 pounds. I didn't care though, because suddenly the power over my future was handed back to me. I took his advice and held onto it tightly because I knew his words were more comforting than the ones I read days before.
Struggling to hope for a pregnancy with CF
As the years passed and eventually I did get braces, graduate high school, and attend college, I learned what it truly meant to have a progressive disease. Unfortunately, I was no stranger to the typical decline that a lot of adolescents with CF experience. I was living with the draining cycle of exacerbation followed by shortening periods of stability until the next episode of lung function or weight loss. I distinctly remember feeling so much quiet sadness following each decline because I felt it put additional space between my dream of motherhood and myself. It was exhausting and frustrating to work so long and hard for something that may never come true.
At the time, I tried to keep busy with my college education, relationships, and attempting to live in the moment; all while knowing my dedication to staying healthy wasn’t for me--but for someone who didn't even exist yet. It was a strange determination to make sense of most of the time. I didn’t know exactly what provoked me to keep moving forward. Now in hindsight, I realize it was the very first seed’s of a mother’s love.
Desperately, I held onto the advice of the past and my fixed desire for motherhood, and hoped it would eventually, somehow, be enough.
What kind of journey did you take to become a mother or father? Did you go through a pregnancy with cystic fibrosis?
Have you (or a loved one) been experiencing any negative side effects from Trikafta?