I was diagnosed with cystic fibrosis at around 8 months old. From a young age, I aspired to become a mother someday. But, as years passed and I grew older, I realized the potential realities of cystic fibrosis. My dream of motherhood was filled with so much uncertainty.
I was able to stay (relatively) healthy growing up. Due to somewhat mild symptoms, diligent parents, and the support of my local cystic fibrosis clinic, I only had a handful of hospitalizations and IV antibiotic courses. I went to college and met my now-husband, Ryan, in 2005 during our freshman year — and we married in 2008.
My husband and I discussed our desire to start a family with my CF doctor in 2010. She understandably had some concerns. At that time, it wasn’t common for women with CF to maintain their health well enough to even consider a pregnancy — let alone have a successful pregnancy without complications. She did not mince her words in expressing her concerns, and at one point in the conversation even asked my husband directly: “Are you prepared to be a single parent?”
We continued to discuss the potential risks of a pregnancy, along with the ways having a child could affect my health, and despite her concerns, she gave us her blessing. In January 2011, we were thrilled to learn that I was pregnant.
My pregnancy with Annalynn went surprisingly well. I gained weight normally, passed my glucose tolerance test, and maintained my lung function, although, I did have one exacerbation requiring IV antibiotics. When she was born full term, I felt so much pride that my body — however imperfect and damaged — could produce such a healthy, seemingly perfect being. I threw myself into motherhood, but that pesky CF could not be ignored.
My CF care team instilled in me the importance of maintaining my treatment regimen during the long days and nights of taking care of a newborn. Despite the initial and ongoing concerns, I felt an environment of encouragement and acceptance during these appointments. The members of the care team would frequently ask about the baby and how we were handling everything. Because of this support, along with the support of my husband and family, I was lucky enough to maintain my lung function for the next several years.
One thing that we realized when Annalynn started going to daycare and school is that kids are called “germ factories” for a reason. When she contracted the seemingly innumerable colds and viruses that children so generously share with each other, I would also contract them. The desire to comfort my child when she didn’t feel well was overwhelming. While Annalynn would only be ill for about a week, these viruses would frequently contribute to month-long exacerbations requiring antibiotics and steroids.
Despite the challenges of these exacerbations, working 12-hour shifts at the local hospital, managing a home and family, and trying to find time for treatments, we decided to try for another baby. I was 27 at the time and felt that if we were going to have another child, now was the time. I was told that the older the maternal age, the higher the risk for pregnancy complications.
I became pregnant in mid-2015. In sharp contrast to my first “easy” pregnancy, I had several exacerbations requiring IV antibiotics and hospitalizations during my second pregnancy. I believe the difficulties of this pregnancy were largely attributed to the later part of the pregnancy being in the winter — AKA cold and flu season. Every time I developed an exacerbation, I would have to go on at least two weeks of IV antibiotics, which involved time off work (it’s rather hard to work 12-hour shifts when you are spending 10 hours a day hooked up to an IV).
The feeling of being a burden to my employer, coworkers, and family, along with the exhaustion caused by these exacerbations and seemingly endless coughing fits, was overwhelming. I now look back at this time with sadness — as I was not really able to enjoy my pregnancy — but also with pride because regardless of how damaged my body was, it was able to bring another life into the world. Emma was born in March 2016 at 34 weeks. Thankfully, she was perfectly healthy, even though she was a bit small at 5 pounds, 4 ounces.
As my children have grown older, I am amazed at their abilities to sense when I may not feel well. They pat my back during a coughing fit and after they go to bed at night, they holler from down the hall, “Mom, are you going to take your treatments?” (It turns out that the hum of my nebulizer machine became a white-noise machine for them.)
Life and motherhood did change drastically when I was able to start Trikafta® in January 2021. For the first time, I was able to have full conversations with the girls and my husband over breakfast, rather than struggling through chest congestion, coughing fits, head and body aches, and exhaustion that go along with it. We were able to laugh, sing, and dance without inducing a coughing fit. I am forever grateful for the opportunity to experience the exhilarating, exhausting, heartbreaking, and heart-warming thing we call motherhood. Regardless of the struggles that it took to get to this point, I would do it all over again for the privilege to watch these little ladies become young women.
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