Cystic Fibrosis Canada will be profiling different journeys of fertility and parenting with CF. If you are interested in sharing your story please email email@example.com.
Guest Post from Dr Carrie Schram MD CCFP MPH
First, I want to thank Megan and the father who shared their stories about becoming parents. The road to parenthood isn’t straightforward or easy for many people and that certainly is the case for a lot of people with Cystic Fibrosis. To speak as openly and honestly as Megan and this father have done is important for others who may be going through similar challenges.
Now, let me introduce myself. I’m a Family Doctor and have done extra training in Women’s Health with a focus on Fertility Medicine. During my medical training, I learned about a woman who was diagnosed with atypical CF later in life. She intrigued me and in my learning more about her, I discovered she also had fertility struggles. This led me to learn more about CF and fertility and to do a small research project on the fertility of women with CF. My interest and specialty is women, so I’m going to apologize to all the men out there now, the next paragraph is about you, but that’s it.
For men with CF, it is well known that fertility can be a major challenge as almost all men with CF are born without a vas deferens. This means that although men with CF make sperm, the sperm are unable to get out of the testicles and into the ejaculate. As for the father with CF who shared his story previously on this blog, the options for having a family include extracting sperm from his testicles and conceiving with IVF (unfortunately extracted sperm don’t work as well as those ejaculated, so IVF is the best option for conception), having a partner conceive with donor sperm, or adoption. Each of these options has associated financial implications and men with CF with their families are encouraged to explore and choose what is best for them. For men who want to learn more about their fertility, I suggest seeing a fertility clinic or a urologist who can order testing and provide more information.
For women with CF, fertility is a bit more complicated. For decades, doctors kept talking about thick cervical mucous as the primary issue with conception. A few case studies on a small number of women with CF who conceived with intrauterine insemination (IUI) (where sperm is washed in a fertility clinic and then placed directly into the uterus) supported this. The other issue with women, is that to conceive a baby you’d have to be in pretty good general health. Although most women who have CF today have a healthy BMI and good lung function, it was not so long ago that women with CF would have had a hard time maintaining a high enough BMI to get pregnant. It was therefore believed that for some women with CF, they were too sick to get pregnant.
Today, however, women with CF can live a long time with great health status. I’m not saying it is easy, but many women with CF are healthy enough to conceive and have a healthy baby (or twins like Megan!). It’s important to know that some women with CF conceive naturally and unplanned pregnancy is very possible. But for many women with CF, the road is tougher. We still believe that cervical mucous plays a role and for some women sperm cannot penetrate well enough for conception to occur. When this is the case, IUI should overcome that barrier and result in pregnancy within a few cycles. This doesn’t always work though, as was the case for the patient I discovered as a medical student. For her and many others, the issue seems to be greater and IVF (in vitro fertilization) is needed. IVF, when the eggs are taken out from the woman and fertilized with sperm in a lab, is a great way to overcome many fertility barriers. It gets around the cervical mucous, helps when sperm is extracted from the testicles directly or there are other sperm issues (such as low count or motility) and helps when the issue seems to be due to a low number or quality of eggs.
This is where my study comes in. The study I did looked at the ovarian reserve, egg quantity, of women with CF. It found that women with CF in their late 20’s have a lower ovarian reserve than women who do not have CF of about the same age. What this means, is that for some women with CF, they may not be getting pregnant due to an egg issue which is best overcome with IVF. In the event that IVF doesn’t work, which sometimes happens, an egg donor or other avenue such as adoption may be needed.
So what should women with CF do?
- Like your CF doctors tell you, do your best to stay as healthy as you can. Illnesses and infections are not always in our control, but control what you can and do your best.
- As a mom myself – who had a first baby later in life I hate giving this advice – but start trying to get pregnant when you’re young. Egg quantity peaks at about age 24, as does fertility, for everyone. So trying before age 30, especially women with CF, optimizes the chances of becoming pregnant naturally or with help. IUI and IVF can overcome some challenges but not always.
- If you’re not ready to try, but having a family is important to you, consider seeing a fertility doctor to have your fertility tested when you’re young (again I mean by about age 30) so you can identify any issues and consider things like egg freezing, if needed. It’s expensive but could make a big difference.
- If you start trying to get pregnant and it’s not working, don’t wait a year to be seen by a fertility specialist. I’d say consider being seen in 3-6 months of trying, to get testing started and really optimize your chances of having a baby.
- Keep an open mind to using a donor egg or adoption. For some women these are hard ideas to get their heads around, but I’ve never seen a mom regret having her family this way. Your children are yours, no matter how they come to be yours, and loving them is the most important thing you can do as a mom.