Cystic Fibrosis and Pregnancy

Cystic fibrosis is a genetic disorder that can cause breathing problems, lung infections and ultimately respiratory failure. The inherited disease causes the body to produce thick, sticky mucus that builds up in the lungs and pancreas, damaging the respiratory and digestive systems. Other organs affected include the liver, intestines, sinuses and sex organs.

As treatments have improved, the life expectancy for those with cystic fibrosis continues to increase – along with the number of women with the disease seeking to start a family.

Pregnancy is possible for women with cystic fibrosis but it can pose serious risks and challenges. If you have cystic fibrosis, it is best to visit with your health care provider to assess your personal risks before becoming pregnant.

Potential Complications

Pregnant women with cystic fibrosis are at risk of complications that include:

• Preterm birth
• Gestational diabetes
• Hypertension
• Exacerbation of respiratory and other disease symptoms, requiring intensified treatments
• Inadequate weight gain
• Reduced fetal growth, or intrauterine growth restriction (IUGR)
• Fetal anomalies
• Jaundice in premature babies

Plan Ahead for You and Your Baby

Your health prior to becoming pregnant will be a key factor in the safety and success of your pregnancy.

While the risks to each woman varies based on her disease symptoms and severity, lung function is an important factor in pregnancy outcomes.

Your health care team can help you plan your pregnancy at a time when you are in the best health possible – including lung function, body mass index and blood glucose levels – for the best possible outcomes.

Will Your Baby Have Cystic Fibrosis?

Your health care provider may refer you to a genetic counselor to discuss the risk of your baby having cystic fibrosis and your testing options. 

It takes two copies of the abnormal cystic fibrosis gene – one from each parent – to inherit cystic fibrosis. A mother with cystic fibrosis will pass on an abnormal gene to her baby, making the child a carrier.  If the father is also a carrier, there is a 50% chance the baby will have cystic fibrosis. Most men with cystic fibrosis are infertile.

Carrier testing using a sample of blood can be performed before or during pregnancy. Diagnostic tests, including chorionic villus sampling (CVS) and amniocentesis, are available during pregnancy to test whether the fetus has the disorder. In addition, all 50 states in the U.S. perform newborn screening for cystic fibrosis.

Genetic testing is optional, but can help parents with family-planning decisions and preparing for the needs of a child with cystic fibrosis.

Pregnancy Care for Women with Cystic Fibrosis

Prenatal care will vary depending on the woman’s disease symptoms and severity and her pregnancy. In general, treatment should include:

• A multidisciplinary health care team including maternal-fetal medicine specialists, pulmonary specialists, registered dieticians, gastroenterologists, genetic counselors, psychologists and social workers, respiratory and physical therapists, otolaryngologists and endocrinologists
• Specialized care from a maternal-fetal medicine physician, an OB/GYN specializing in high-risk pregnancies
• Close collaboration between your OB/GYN and your cystic fibrosis health care team
• A thorough review of your cystic fibrosis treatments, therapies and medications, with ongoing adjustments made throughout pregnancy, as needed
• Close monitoring and careful management of your lung function, weight, nutritional status, blood glucose levels and infections
• Fetal ultrasounds to detect anomalies
• Support services for the mother and family

The Benefits of Specialized Care

At Texas Children’s Pavilion for Women, our maternal-fetal medicine specialists are experienced in evaluating and managing these complex, high-risk pregnancies to help women with cystic fibrosis achieve the healthiest possible pregnancy and best possible outcomes.

We offer:

• Preconception risk assessment and counseling
• Prenatal evaluation and a recommended plan of care tailored to your needs and pregnancy
• Expert genetic counseling and the latest testing technologies, through the Prenatal Genetics Clinic at Baylor College of Medicine, the largest of its kind in the country
• Advanced fetal imaging for early detection of anomalies
• Immediate access to Texas Children’s Hospital, for babies who need extra care and monitoring, including Texas Children’s Fetal Center™, a national leader in diagnosing and treating fetal abnormalities, Texas Children’s Newborn Center and our level IV neonatal intensive care unit (NICU)
• Expert pediatric care for children with cystic fibrosis through the Cystic Fibrosis Care Center at Texas Children's Hospital
• Access to leading-edge adult care from a Cystic Fibrosis Foundation-accredited center, the Maconda Brown O'Connor, Ph.D. Adult Cystic Fibrosis Center at Baylor College of Medicine
• Specialized support for the emotional challenges of these pregnancies through The Women’s Place - Center for Reproductive Psychiatry, a unique program dedicated to the treatment of women’s reproductive mental health