Becoming Mom: My Path to CF Motherhood (Part 2)
My long, winding path to motherhood with cystic fibrosis continues from where we left off last. In case you missed the beginning of this story, here's a summary: a pre-teen with cystic fibrosis given encouraging medical advice about the possibility of pregnancy and motherhood, a young woman weary of trying to stay healthy, and an unrecognized determination to be a mom despite the enormous uncertainty.
Not much changed over the course of a few years, until I met my husband at the end of college. Suddenly the reality of a spouse and child wasn’t just a naive dream--it was finally unfolding before me as I continued to live my life. Happily, we were soon married, and began our life as a couple in a tiny duplex in the midwest, still uncertain if we would ever be parents.
Preparing for the possibilities
Almost immediately, we planned to have my husband tested to see if he was a genetic carrier of CF. The results of the carrier testing would help us determine if biological children were even an option. If my husband was a carrier, our child would have a 50% chance of having CF as well. Personally, I knew I couldn’t put the terms and experiences of my disease on someone I loved. (However, I understand that’s not the right choice for everyone and every situation, and I completely respect that decision.) If he wasn’t a carrier, our child would ultimately be a carrier themselves. After a painfully slow two-week wait, we learned he wasn’t a carrier of CF (Yay!). Biological children were still a possibility for us.
Another uncertainty in this journey was made certain following my husband’s testing, but it didn’t grant the desire of my heart immediately. For three years, I struggled watching people around me become mothers with what peripherally seemed like little effort and preparation. I felt jealousy and hurt like I had never experienced before. After all this time and focus, I still wasn’t sure our time would ever come. Once again, this season of life was silently draining as I tried to remain patient and hopeful, while also struggling to keep to my lung function high enough to be physically capable of a healthy pregnancy.
Shortly after, Orkambi, the first CFTR modulator of its kind for my particular mutation, was released to the public and the CF community celebrated. It brought the possibility of stability, better quality of life, and additional hope. In our hearts, I think we knew this was our time to take a leap of faith.
Pregnancy with cystic fibrosis
All the waiting and devotion to caring for my body served me well--I was finally growing life inside me! My Orkambi pregnancy proved to be a complete joy. Unlike some of the warnings from various medical teams, pregnancy was the healthiest I had been in my adult life. My lung function increased, and I was able to gain a steady 26 lb overall.
Our baby continued to grow and thrive as the months passed. There were, of course, challenges during that time such as crazy pregnancy CF-related diabetes blood sugars and a rounded belly so big it slowed me down quite a bit. Honestly, I didn't care. I was just thrilled by every change and milestone.
I’m not sure if pregnancy was a joy because I had hoped it to be for so long, or if I’m one of those annoying women who were made to be pregnant? Either way, we were becoming the parents we hoped to be. Finally, I was becoming the mom I hoped to be.
Becoming a mom
In late August of 2017, I gave birth to our son and life as we knew it became so much brighter. Lastly, I had my baby in my arms. I don’t believe the words exist to describe the feeling of holding your baby for the first time--especially a precious baby you have dreamed about for what felt like an eternity. Those seeds of love planted over a decade ago sprouted far beyond what I imagined. Finally, I understood what a mother’s love was all about-- the intensity, the sacrifice, the certainty. It's a love so incandescent, it's blinding.
Pregnancy and motherhood with cystic fibrosis is undoubtedly the hardest thing I have ever done. It has tested me in various ways, both physically and mentally. Teetering the balance of giving my son every ounce of me with the knowledge of how important my health is has been a learning curve these past few years. I am continually learning what a "good" mom with CF looks like in our family. However, I am certain, without a doubt, his existence in my life propels me to be better in every facet and every mutated cell.
Have you experienced pregnancy with cystic fibrosis? What was your experience like? Share with us in the comments below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?