If you’ve lived with cystic fibrosis (CF) your whole life, you’re already used to the challenges that the condition comes with — but you’re also used to working hard at overcoming them.
Though additional management of your condition may be required during pregnancy, there are plenty of things that you and your doctors can do to help make the experience safe, smooth and worry-free.
What is cystic fibrosis?
Cystic fibrosis (CF) is a genetic condition that causes a thick buildup of mucus in the lungs, pancreas and other organs, making both breathing and digestion difficult.[1]
There are close to 40,000 people from all ethnic backgrounds in the U.S. who have this chronic condition. And approximately 2,500 children are born every year with CF. Although most are diagnosed with CF by the age of 2, some find out they have the condition later in life.
Common signs and symptoms of CF include poor weight gain and growth in spite of a healthy appetite, as well as reduced lung function and difficulty breathing. These conditions need to be monitored even more closely in pregnant women.[2]
What causes cystic fibrosis?
CF is an inherited disorder, or hereditary disease, that’s passed on to a baby when both parents have one copy of the recessive gene for the disorder.
How can you tell if you're a CF carrier?
About 1 in every 20 Americans is an unaffected carrier of a “CF gene,” according to the Centers for Disease Control and Prevention (CDC), which also notes that these 12 million people are usually unaware that they have this recessive/defective gene.
You might be a CF carrier if one or both of your parents had the gene. Carrier screening during pregnancy is done through a simple blood test and can help determine if you carry the gene. You and your partner may decide against a screening for personal reasons.
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Both the American College of Obstetricians and Gynecologists (ACOG) and the American College of Medical Genetics and Genomics (ACMG) agree that couples should have the option to receive carrier screening, should they choose.
Discuss your options with an OB/GYN and/or genetic counselor before getting genetic testing. Keep in mind that you can always choose to opt out of any or all carrier screenings or request not to receive certain results.
Can you get pregnant if you have cystic fibrosis?
Yes. Many women with CF can get pregnant and have a healthy pregnancy; however, most men with CF are sterile because they’re missing the vas deferens, the tube that connects the testes to the prostate gland.
To properly manage your CF before and during pregnancy, make sure to tell your health care team. In ideal circumstances, you should be seen by a board-certified maternal fetal medicine specialist who will help you monitor your pregnancy, refer you to the proper specialists (e.g. a pulmonologist), and discuss your nutritional status .
You’ll want to have good lung function before trying to conceive, which is why a preconception visit with a maternal fetal medicine specialist may be best to assess your pregnancy safety. This increases your odds of carrying to term and having a healthy baby, as does close monitoring by CF specialists and your OB throughout your entire pregnancy.
Another reason it can be important to tell your doctors (if you can) before you try for a baby: They can review your medication list to make sure all prescribed medications are safe for your baby.
If you and your partner are carriers of CF you may both consider in vitro fertilization (IVF) as an option in selecting embryos without CF disease This option can be discussed with your doctor and a genetic counselor.
How does cystic fibrosis affect pregnancy?
In general, pregnancy doesn’t seem to have any negative long-term effects on CF. But the strain of carrying a baby can complicate symptoms associated with the condition.
That’s why pregnant women with CF have more frequent prenatal visits than the average mom-to-be, so your doctors/health team can keep a close eye on the following possible complications:
Poor weight gain. It may be difficult to maintain adequate nutrition and gain enough weight, so working closely with your doctors to ensure that the numbers on the scale keep climbing will be important. You might consider enlisting a dietitian to help you with meal plans and nutrition. They can also help you manage your weight.
Respiratory infections. Because respiratory infections can escalate quickly in people with CF, it’s even more important during pregnancy to treat them aggressively so the amount of oxygen delivered to your body and your baby isn’t compromised. A respiratory therapist can help with breathing therapy and medications to keep airways clear.
Gestational diabetes (GD). This is a medical condition in which there’s too much sugar (glucose) in the blood. If you have CF and don’t have diabetes prior to pregnancy, you’ll be at increased risk of developing gestational diabetes. Your care team may expand to include an endocrinologist (a doctor with special training in the treatment of diabetes) and certified diabetes educators who will help you manage the condition. GD occurs in 3 to 15 percent of all pregnancies, and is one of the most common complications. Risk factors for developing gestational diabetes beyond cystic fibrosis include advanced maternal age of 35 or older, a family history of diabetes, a sedentary lifestyle, and obesity.
Premature delivery. Severe respiratory disease and poor nutrition and weight gain can increase your chance of a premature or preterm delivery. Your doctor may recommend precautions to make sure you carry your baby to term, such as recommending additional ultrasounds or even periodic hospitalization.
What are the chances of having a baby with cystic fibrosis if you have CF?
Prior to conception, your partner can undergo genetic counseling to determine if he is a carrier and help you understand your chances of passing CF to your baby. If he isn’t a carrier for CF, there’s very little chance that your baby will be affected by it (though he or she will be a carrier). If your partner is a carrier, there’s a 1 in 4 chance that your baby will be affected.
Once you are pregnant, a prenatal test can determine whether your baby has CF or is a carrier. Tests including chorionic villus sampling (CVS) and amniocentesis are available during pregnancy to determine whether CF is present. And your baby will also be tested (simple heel stick) before you go home from the hospital. This information will help you discuss with your doctors what kind of treatment your baby may need after birth.
Pregnancy isn’t easy no matter what, and it’s certainly more complicated for those with CF. But that cuddly reward — the beautiful baby you’re working so hard for — can make all the challenges more than worthwhile.
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