Growing up, I always knew I wanted children. I adored spending time with and taking care of my younger cousins, babysitting, and, to this day, my husband makes fun of me for excitedly cooing at every baby we pass on the street. I was never told that my having cystic fibrosis would prevent me from having a successful pregnancy. Nor was I told that it was a rarity, so I assumed that when I was ready, I would start a family just like many of my peers. I started seriously thinking about becoming pregnant when my husband and I were dating.

When I first spoke to my CF doctor about having children, she was anxious, but supportive, and told us, “She's not getting any younger, so the sooner, the better.” I was 29.

The health of women with CF during pregnancy was not being tracked then. She let us know my health could go three ways during pregnancy: It could decline, it could get better, or it could stay the same. She encouraged me to spend the next year getting into the best possible physical and “lung” shape. My husband, Steve, got genetic testing done to make sure he didn't have any CF mutations. At that time, there were not many women at our center who had given birth, but my doctor referred me to an obstetrician/gynecologist who had seen another of her CF patients and, therefore, was considered experienced. I expected that it would take time to get pregnant, not because, as I later learned, women with CF have thicker cervical mucus that can make it harder to conceive, but because my mother had had a hard time.

My health did not decline during my pregnancy. My doctor attributed that to my long torso, which gave the baby enough room to move without hindering my breathing. I did not have to worry about which IV antibiotics were safe during pregnancy because I did not get sick. Not to say it was uneventful. My initial quad screen came back low, indicating a potential birth defect, and, if not for having an incredible genetic counselor advocating for me to retest and further analyze the baby through an ultrasound, I would have had to endure an unnecessary amniocentesis. I was put on bedrest in my third trimester when my OB worried that the baby wasn't growing because I wasn't gaining as much weight as her non-CF patients. At 37.5 weeks, we found out that my amniotic fluid was low and immediately started inducing labor. The next day, I gave birth to a beautiful, healthy, 6 pound-6 ounce baby girl. 

I realize how lucky I was back then, but what a difference it would have made for me to talk to other pregnant women with CF.

It was 2002 when my husband and I started planning with my doctor. My CF center had already stopped adult support groups because of cross-infection. I had no other friends with CF to talk to about what it meant to be pregnant with CF: the risks, anxieties, pregnancy vs. adoption, and what to do if my second quad screen had shown defects -- could I care for both myself and a baby with severe health issues? There was no Facebook, no social media, no widespread texting. We were not yet fervently researching articles on the web -- not that there would be many written on the topic anyway. I didn't even know what concerns to address with my providers.

That is why I am so proud to be part of the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC). I first discovered CFReSHC during a sexual and reproductive health MiniCon put on by the CF Foundation and was floored that it never occurred to me that, of course, cystic fibrosis would affect issues like menstruation, contraception methods, pregnancy, and menopause. I began attending Patient Task Force meetings and heard from other women who shared issues that I thought were mine alone. I feel fortunate to be part of a group of patient partners, researchers, and clinicians whose goal it is to further research on sexual and reproductive health using the experiential expertise of adults with CF assigned female at birth.

It would have been so beneficial to have a group like this when I contemplated starting a family. It is my wish that future generations of young women and adolescents will be able to use CFReSHC's work to make informed decisions about their sexual and reproductive health.

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