Cystic Fibrosis How Cystic Fibrosis Affects Fertility and Pregnancy

Effective treatments are helping people with cystic fibrosis live longer, and these treatments also seem to increase women’s fertility. Pregnancies are on the rise for people living with cystic fibrosis. In 2009, 230 pregnancies were reported, but the number increased to 619 pregnancies in 2020.

Fertility and birth control

Most men and some women living with cystic fibrosis have reduced fertility . Male carriers often have low fertility, too.

Most men with cystic fibrosis are born without the tubes that carry sperm from the testicles into the semen. Men who are carriers may also lack these tubes. Regardless, they can still have normal, healthy sex lives and may be able to father biological children through assisted reproductive technology .

Previously, women with cystic fibrosis did not have to worry much about birth control, due to low fertility, but CFTR modulator medicines are now leading to more pregnancies. It is important for women of childbearing age to talk about birth control and pregnancy planning with their healthcare providers.

Before pregnancy

Ask your healthcare provider about preconception care (before pregnancy) as you plan for your reproductive health. Review your medicines with your provider to see whether they are safe to take during pregnancy.

Cystic fibrosis is an inherited disease. If you have cystic fibrosis, your baby will either be a carrier of a mutated CFTR gene or be born with cystic fibrosis, depending on the father’s DNA. Genetic testing can identify mutated CFTR genes. Your provider may recommend preconception screening for you, your partner or both of you. A genetic counselor can help explain the results.

Assisted reproductive technology may be an option for couples who want to avoid passing mutated CFTR genes to their children.

Pregnancy

Your healthcare provider may recommend genetic testing for you and your partner. If your partner is a carrier of a mutated CFTR gene, then prenatal diagnostic testing may be performed to check the unborn baby for CFTR gene mutations .

Pregnancy outcomes are generally good for pregnant people who have cystic fibrosis and for their babies. However, there are some considerations and risks for women who have cystic fibrosis and for their babies.

You may have a higher risk for having a preterm (premature) birth or needing a C-section. Women who have reduced lung function may have higher risk for preterm delivery; their healthcare providers should monitor their health closely during pregnancy.
Newborns may have a low birthweight.
Some women with mild or moderate cystic fibrosis lung disease have a higher risk of lung exacerbations while pregnant.
While you are pregnant, your healthcare provider may recommend changes in your medicines. If you are on ivacaftor while pregnant, your provider may recommend checking your baby’s eyes and liver after you give birth.
Your healthcare provider will screen you for gestational diabetes early in your pregnancy. Pregnancy may increase your risk of developing diabetes, which may remain even after giving birth.
Talk with your healthcare provider about monitoring your nutrition and weight gain during pregnancy.
Your lung function may change after giving birth.

New parents with cystic fibrosis say it is important to be prepared and organized so you can manage the demands of parenthood and your own cystic fibrosis care. Your partner, family and friends, and community may be sources of support to help care for your child and keep your treatment on track. Some new parents even say that their children learn to help with cystic fibrosis treatments.

Breastfeeding and breastmilk

If you are planning to breastfeed your baby, talk to your healthcare provider about it ahead of time.

Some medicines transfer into breast milk. If you are taking ivacaftor, your baby’s provider may monitor their eyes and liver to watch for possible side effects.
Your nutrition and food-energy needs will increase if you breastfeed your baby. Work with your healthcare provider to set up a nutrition plan to help you stay healthy.