A Kalydeco Pregnancy – Cindy Baldwin’s Story

 Kalydeco Heart - Approved

My husband, Mahon, and I were married in the summer of 2008. Although we both came from families with six children each and knew we would love a large family of our own, we also recognized early on in our relationship that my health would probably allow for only one or two children. Because I was in and out of the hospital for all of our engagement, and still not back to my normal level of stability by the time we were married, we also knew that we would need to wait awhile before trying to have children. Although my baseline lung function was high (in the mid 80 % range and sometimes low 90% range) and I did not have CF-related diabetes, I was sick very often and at that point usually on IVs about four times a year.

For the first two years of our marriage, I spent a lot of time researching CF pregnancy, reading stories of those who had been pregnant, and talking about pros and cons with my husband, my parents, and my CF care team. My husband and I were not initially sure whether we felt like pursuing pregnancy would be the best option; I knew that caring for a newborn would be hard on my health and worried that going through a pregnancy beforehand could leave me in a dangerously weakened condition. I’d had a hard time finding many people who had been pregnant with CF, and many of the women I did talk to had had a very difficult time, which added to our confusion. Mahon and I had talked about adopting and had always been very comfortable with and open to the idea, so we seriously considered adopting for medical reasons rather than attempting a pregnancy.

Eventually, however, after lots of research and consultation with doctors, we decided that we felt comfortable pursuing pregnancy. Mahon had not been tested to see if he was a carrier yet, so we decided that we would get his test done as soon as possible and then stop birth control. There was then a delay of several months in getting the test done (due to insurance reasons) and after two years and of wanting so badly to be parents, being confronted with even MORE waiting was very difficult!

There were still more delays once the test was done as the results took twice as long as expected, and I also ended up in hospital on a three-week course of IVs. Even once I was finally able to stop birth control, I was daunted by the thought of having to wait even longer. I had always had very long, irregular cycles—usually only four or five a year at most—and had been prone to bouts of anovulation as long as nine months. I knew that the chances of getting pregnant quickly were slim, but I still held out a little hope.

I had never had any negative side effects from being on birth control but coming off of it was tough! For the first month or two, I dealt with hormonal changes that were both frustrating and crazy, including severe hot flashes and losing an enormous amount of hair. About a month after I came off the pill, I started to suspect that I might be pregnant. For a few weeks, my husband and I were almost sure that I was pregnant, but after an agonizing wait, the blood tests came back negative. Not being pregnant felt even more frustrating when I knew that all the “pregnancy” symptoms I had had were just a result of hormones that were completely out of control.

Within only two or three months of coming off the pill, it became clear that I would not be getting pregnant without some kind of assistance. I had started charting my cycles (using my daily temperature along with other signs such as cervical mucus and cervical position to determine when I was ovulating) as soon as I stopped birth control, which was extremely helpful in pinpointing my problems. And there certainly were problems! My cycles were long and irregular, with very late ovulation and almost no chance at a pregnancy. About six months after coming off birth control I had my hormone levels checked and they came back showing that all of my hormones were so low that I was almost in the range of menopause at the age of just twenty-three. A cause couldn’t be found and my doctors agreed that it was almost certainly just from the stress CF was placing on my system.

After doing a lot of research and discussion with my doctor, we decided that starting on Clomid (a drug to boost ovulation) would be our best option. My doctor offered me the chance to start it about six months of trying to conceive, but I had contracted a bad infection the month before and felt like I needed to get my health back on the right track before pursuing fertility treatments. I decided to wait a few months and then start the Clomid.

I spent the next season really working to get my health stable again. When I felt like the timing was right, I made an appointment with my doctor to start Clomid the next cycle. Everything was ready to go, until my husband received a totally-out-of-the-blue job offer in another state. Suddenly, we were planning to move four hours away in less than a month, and because of transitioning to a new job we would be without active health insurance for several weeks, making my planned Clomid cycle impossible.

“Crushed” doesn’t even begin to describe how I felt. I struggled with the way things had worked out, feeling incredibly frustrated that I hadn’t felt well enough to pursue treatments a few months earlier when I’d had the opportunity. However, I didn’t have much choice, so I cancelled the cycle and planned to find a new doctor after we moved. Once we moved, though, I was once again sick and in need of hospitalization, which pushed my fertility treatments back yet again.

In the end, that Clomid cycle was never meant to be! After being released from the hospital in the spring of 2012, I started on the recently released drug ‘Kalydeco’  – the first medication ever produced that targets the underlying cause of CF in the 4-5% of the CF population who carry a G551D mutation (of which I am one). I decided to delay the Clomid in the hopes that Kalydeco might help correct my low hormone levels and make it un-necessary. 

 Cindy Baldwin Kaydeco - Approved 

About 6 weeks after I started on Kalydeco, I began to have a lot of symptoms I’d never had before and I started suspecting I might be pregnant. When my period did come, it was heavier than normal and somewhat unusual. I wondered if I could have experienced an early miscarriage. The very next cycle, all of my symptoms returned, and to my incredible surprise, I got a positive pregnancy test! Although I don’t have proof because I never tested, I’m certain that the first Kalydeco cycle was a very early miscarriage. My doctors and I all agreed that both pregnancies were a result of Kalydeco normalizing my hormones somewhat. My infertility was technically “unexplained infertility,” but my doctors and I had always suspected that my hormone levels were so low (making it impossible for us to conceive) as a direct result of the stress CF was placing on my body. Our best guess is that going on Kalydeco took enough stress off my system that my hormones were able to increase and I was able to successfully get pregnant.

The years that I spent waiting for a baby, and the period of infertility that I experienced before finally getting my miracle pregnancy, were some of the hardest of my CF experience to date. Infertility by itself is heartbreaking and incredibly difficult, but in my opinion, adding CF into the mix makes it even harder. It’s impossible not to spend the years of waiting second-guessing your choices, worrying every time you get an infection, and feeling like time is running out and by the time you do get pregnant, your health might not be able to sustain it. It’s so hard to want a child so badly, but at the same time worry about the possibility of leaving that child motherless before you are ready. In the end, though, I think that CF women are bound to make the best mothers in the world—not only do we usually have to suffer through long periods of infertility and other health challenges, but we know just how precious each moment with our miracle baby is!

Cindy Baldwin Pregnancy (approved)

I’m very grateful to have had the chance to start on Kalydeco, as I don’t know if pregnancy would have been possible for me without it. Not only did it make it possible for me to conceive in the first place, but it’s also helped me to have a VERY healthy pregnancy! I’ve been much healthier and more stable than I ever expected to be during pregnancy. I’m now just a few weeks away from delivering my beautiful baby girl, and can’t wait to be able to finally fulfill my dream of becoming a mother.

You can follow Cindy’s story on her blog here: www.beingcindy.blogspot.com