What I Wish I Knew When I Was Pregnant With CF

When I was pregnant in the early 2000s, there was little information available about cystic fibrosis and pregnancy, and I didn't even know what concerns to address with my providers. I am glad more women with CF have shared their family building experience.

| 5 min read
Melissa-Shiffman-Headshot
Melissa Shiffman
Melissa-Shiffman-Baby-On-Chest-Featured-Rectangle

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.

Melissa-Shiffman-Pregnant-Rectangle

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.

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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.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Topics
Family Planning & Parenting | Fertility and Reproductive Health
Melissa-Shiffman-Headshot

Melissa was diagnosed with cystic fibrosis at the age of 5. After briefly working in the music industry, she became a social worker, which heightened her interest in politics. Melissa began advocating with the CF Foundation in 2011 and served as National Advocacy Co-Chair for 3 years. She continues to advocate in Washington, D.C., and New York on behalf of the Foundation for policies that will help extend and better the lives of people with CF and their families. She is a member of the Cystic Fibrosis Reproduction and Sexual Health Collaborative (CFReSHC), which produced the Cystic Fibrosis Sexual and Reproductive Guide -- a guide written by patients for providers and patients on topics such as body image, contraception, hormones, family building, and more. Melissa resides in downtown New York City with her husband, two children, and two guinea pigs.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.