August kicked off with World Breastfeeding Week, a celebration recognized by more than 79 countries that promotes breastfeeding for the first six months of life. The celebration made me wonder about pregnancy and motherhood for women with CF. The topic of pregnancy and motherhood seems foreign and undiscussed in the cystic fibrosis community, so to dissolve some mystery, I interviewed four mothers with CF.
This is part one of two. This week’s post focuses on pregnancy, while next week will revolve around raising children while having CF.
Stigmas surrounding being pregnant while having cystic fibrosis
Research and medication advancements for people with CF have completely transformed care these last few years, so I wondered if clinics now welcome (or caution against) potential parenthood. I was also curious about available resources for women with CF who are pregnant or want to have a baby.
Gillian: ”The CF population now is really starting to live longer and have the opportunity for things like pregnancy. There were many unknowns. I believe I was my doctor’s first CF patient to be pregnant, so we learned a lot together.”
Janeil: “… there is a very helpful CF mummies [support] group on Facebook, but other than that there’s very little accessible and detailed information. The [CF Foundation] website just added a reproductive health section within the last couple years. We definitely need more resources and information.”
Colette: “I felt there were not resources available for me to read about CF and pregnancy. I read the regular resources — just about being pregnant in general — in both my pregnancies.”
Tamara: “There was definitely not enough information about pregnancy with cystic fibrosis. I only knew anything about pregnancy and the possibility because of a Facebook group for women with cystic fibrosis who were, or wanted to become mommies. I knew with CF that doctors never really discussed pregnancy because it was such a big deal. The toll on your health was always said to be significant after pregnancy, and during. Most CF care teams didn’t advocate for starting families because they knew health generally went down during or after pregnancy. Statistic-wise, that’s just what happens.”
CF teams and pregnancy
These women’s experiences were similar in many ways, but what struck me was finding out that available CF pregnancy information and resources are tightly limited. Despite this obstacle, the future mamas pursued motherhood with what was available and the medical infrastructure that did exist. For some, where there was a lack of information, CF care teams stepped in with extra care.
Gillian: “[My doctors] were supportive and tried to be as proactive as possible. They referred me to a high risk OBGYN and kept a close eye on my blood sugars.”
Janeil: “My pregnancy was very much planned, many years in the making. My clinic was involved from the very beginning and was super supportive through my pregnancy and this first year of motherhood.”
Colette: “I did not attend a CF clinic during either of my pregnancies. I wish I had. But at the time, I went to a pulmonologist. I don’t remember what his response was, but he never said anything that was unsupportive.”
Tamara: “My CF doctors were both excited and leery of pregnancy because they, of course, want their patients to live a long life with the disease.”
These CF mamas’ care teams also provided referrals to high-risk specialists.
Gillian: “I did see a high-risk OBGYN. It was a teaching hospital, so I never saw the same doctor twice. That was challenging at times because [my partner and I] were constantly explaining our story. My CF doctors wanted me to be at a practice within the hospital so they could easily be there for my delivery and assist in CF needs if they arose. We also did more frequent ultrasounds to check baby’s growth and tracked my blood sugars closely.”
Janeil: “Yes, I saw a high-risk OBGYN that coordinated care with my CF team. I also worked with an OBGYN diabetes nurse. I saw both teams more often through my pregnancy. Lots of appointments!”
Colette: “For my first pregnancy, I had a specialist, a high-risk fertility doctor that checked on me often and collaborated with my OBGYN, and my pulmonologist. During my second pregnancy, that fertility specialist was not covered by my insurance anymore, so I just kept in touch with my OBGYN and my pulmonologist and they treated me as a regular pregnant woman. No special care was needed.”
Tamara: ”I asked my doctors beforehand [getting pregnant], and they suggested having a year of full compliance and lung function in the 70s percentile. I got there and started to seek fertility help due to cervical mucus issues.”
Check back in next week Thursday for the rest of the interviews.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.