Getting Married and Starting a Family with Cystic Fibrosis

Many people with cystic fibrosis (CF) are now living well into middle-aged adulthood. This means that more people with the disease are old enough and healthy enough to become independent adults who go to college, hold down jobs, get married, and have children. However, there are some special considerations when people with CF get married and start a family.

Getting married with cystic fibrosis

The Cystic Fibrosis Foundation reports that the number of people with CF who are married or living together has almost doubled in the last 10 years. The foundation’s 2017 Patient Registry Annual Data Report found that 43.4% of people in the CF registry were married or living together, 5% were separated or divorced, and 0.4% were widowed.^1,2

Before getting married, it is important to thoroughly discuss some issues common to adults who have CF:

• They may need help to maintain treatments when sick, which can be time-consuming.
• They need encouragement to maintain their treatments and exercise regimen.
• Men have a high probability of being infertile and women may be less fertile. Therefore, having babies may require medical intervention or be impossible.
• CF care can be expensive, even with insurance.

Considerations for starting a family

As their overall health and longevity improves, more women with CF are choosing to have children. The number of U.S. women with CF who get pregnant has grown since the 1990s. According to the CF Foundation’s Annual Data Report, 138 females with CF ages 14 to 45 years old reported a pregnancy in 1990. By 2017, that number had roughly doubled to 273 pregnancies.^1-4

Cystic fibrosis and pregnancy

Genetic testing and counseling are recommended before getting pregnant if one of the partners has cystic fibrosis. The person with CF will give one copy of the CF gene to all of their children, so it is vital to know if your partner is also a carrier. The sexual health issues that men and women with CF experience may mean extra medical procedures are needed to get pregnant. These may include medications to encourage ovulation, artificial insemination, or in vitro fertilization.^3,4

Considerations for men and women

Women with CF may need an obstetrician who specializes in high-risk pregnancies. They certainly need to optimize their nutrition and lung function in order to become pregnant and carry a baby to term. Both men and women with CF should arrange for help caring for their baby after birth so that they can maintain your health regimen. Some people decide to start a family early when their health is optimal, and they have a better chance of living long enough to take care of their children.^2-4