Cystic fibrosis and pregnancy

KEY POINTS

  • Cystic fibrosis (also called CF) is a condition that causes thick mucus to build up in the body. This causes problems with breathing and digestion.

  • CF is passed from parents to children through genes. You can get a screening test to find out if you carry the gene for CF.

  • If you or your partner has CF or is a CF carrier, you can have a prenatal test to find out if your baby has CF or is a CF carrier.

  • Your provider team helps you manage CF during pregnancy. You may need change to a different treatment or medicine that’s safer for your baby.

  • Most women with CF can have a healthy pregnancy.

What is cystic fibrosis?

Cystic fibrosis (also called CF) is a chronic health condition in which very thick mucus builds up in the body. This causes problems with breathing and digestion. Digestion is the way your body processes the food you eat. A chronic health condition is one that lasts for 1 year or more that needs ongoing medical care and that can limit your usual activities and affect daily life.

Mucus is a fluid that normally coats and protects parts of the body. It’s usually slippery and watery. But in CF, the mucus is thicker and sticky. It builds up in the lungs and digestive system and can cause problems with how you breathe and digest food. The buildup of mucus in the body makes it easy for harmful bacteria to grow. This can lead to infections. 

More than 30,000 people in the United States have CF. More than half of these people are 18 or older. About 1,000 new cases are diagnosed each year. Most people with CF are diagnosed by age 2. 

Most women with CF can have a healthy pregnancy. But CF can cause complications before and during pregnancy. 

Can CF cause problems during pregnancy?

Yes, but most women with CF have healthy pregnancies. To best manage CF during pregnancy, you need a team of health care providers who work together to give you the best all-around care. Your team is led by:

  • Your prenatal care provider. This most likely is a maternal-fetal medicine (MFM) doctor (also called a high-risk OB). This is a doctor with education and training to take care of women who have high-risk pregnancies.
  • The CF provider. This most likely is a pulmonologist. This is a doctor who treats lung conditions, including CF.

Your team also may include:

  • A CF nurse who helps you manage your overall care
  • A CF dietitian who helps you with meal plans and nutrition and helps you manage your weight
  • A CF social worker who helps you manage CF as part of your daily life
  • A CF psychologist or other mental health professional who helps you deal with emotional aspects, like stress, that can come with CF
  • A CF respiratory therapist who helps you with breathing therapy and inhaled medicines to help keep your airways clear
  • A CF physical therapist to help you with a fitness plan

You may get your CF care at an accredited CF care center. These centers have expert providers who specialize in treating people with CF. 

If you have CF, make sure each provider knows about your pregnancy plans before you get pregnant. Your providers work together to help you get ready for pregnancy and stay healthy during pregnancy. Your provider team monitors you closely throughout pregnancy to manage your CF and make sure you and your baby are doing well.

If you have CF, you’re at increased risk for diabetes, and you can have problems with breathing, nutrition and liver function. Symptoms of CF can get worse during pregnancy. For example, you’re more likely to have pulmonary exacerbations during pregnancy. This is when your breathing gets worse.  And you’re more likely to have constipation during pregnancy. This is when you don’t have bowel movements or they don’t happen often, or your stools (poop) are hard to pass.

All of these conditions can lead to pregnancy complications, including:

  • Infertility. This means you have trouble getting pregnant.
  • Premature birth. This is when your baby is born early, before 37 weeks of pregnancy. Babies born early are more likely to have health problems at birth and later in life than babies born full term.
  • Gestational diabetes. This is a kind of diabetes that some women get during pregnancy. Diabetes is a medical condition in which your body has too much sugar (called glucose or blood sugar) in your blood. This can damage organs in your body, including blood vessels, nerves, eyes and kidneys. If you have CF and don’t have preexisting diabetes (diabetes before pregnancy), you’re at increased risk to develop gestational diabetes.
  • Not gaining enough weight during pregnancy. Your nutrition needs change during pregnancy. This can cause you to lose weight or not gain enough weight during pregnancy. Gaining the right amount of weight during pregnancy helps support your baby’s growth and development.
  • Vitamin A toxicity. This means you have too much vitamin A in your body. Vitamin A helps your body fight infections and helps you have healthy skin, vision and intestines. If you have CF, you may have trouble absorbing vitamin A, so you may take a vitamin A supplement to help you get the right amount. But it may be too much during pregnancy. Too much vitamin A early in pregnancy can affect your baby’s development.
  • High blood pressure (also called hypertension). This is when the force of blood against the walls of the blood vessels is too high. It can stress your heart and cause problems during pregnancy.

What causes CF?

CF is inherited (also called genetic). This means it’s passed from parents to children through genes. A gene is a part of your body’s cells that stores instructions for the way your body grows and works. Genes come in pairs — you get one of each pair from each parent. CF is one of the most common genetic conditions in the United States.

Sometimes the instructions in genes change. This is called a gene change (also called a mutation). The gene change in CF affects a protein that controls the balance of salt and water in the body. This causes the body to make thick, sticky mucus and salty sweat.

Parents can pass gene changes to their children. Sometimes a gene change can cause a gene to not work correctly. Sometimes it can cause birth defects or other health conditions. Birth defects are health conditions that are present at birth. They change the shape or function of one or more parts of the body. Birth defects can cause problems in overall health, how the body develops or how the body works.

You have to inherit a gene change for CF from both parents to have CF. If you inherit the gene change from just one parent, you have the gene change for CF, but you don’t have the condition. When this happens, you’re called a CF carrier. A CF carrier has the gene change but not the condition. 

If you and your partner are both CF carriers, your baby may get two CF gene changes (one from each of you) and have CF. About 1 in every 20 people is a CF carrier. If you and your partner are both CF carriers, there is a:

  • 3-in-4 chance (75 percent) that your baby won’t have CF
  • 1-in-2 chance (50 percent) that your child won’t have CF but will be a CF carrier
  • 1-in-4 chance (25 percent) that your child will have CF
  • 1-in-4 chance (25 percent) that your child will not have CF and not be a carrier 

If you and your partner both have CF, your baby will have CF. But most men with CF are infertile and can’t get their partner pregnant. 

Genetic counseling can help you understand your chances of passing CF to your baby. A genetic counselor is a person who is trained to help you understand about how genes, birth defects and other medical conditions run in families, and how they can affect your health and your baby's health. Ask your health care provider if you need help finding a genetic counselor. Or contact the National Society of Genetic Counselors

How can you find out if you’re a CF carrier?

You can get carrier screening before or during pregnancy to find out if you’re a CF carrier. There are two kinds of carrier screening tests: 

  1. A blood test
  2. A saliva test. Saliva (also called spit) is the clear liquid that’s inside your mouth. 

Your provider sends the blood or saliva sample to a lab for testing. Both tests are safe to take during pregnancy. 

Carrier screening is your choice. You don’t have to have it if you don’t want it, even if your provider recommends it. All pregnant women or women who are thinking about getting pregnant can get screened for CF. If screening shows that you’re a CF carrier, your partner can get screening, too.

About 1 in 31 people in the United States is a CF carrier. You and your partner may want to have CF carrier testing if:

  • CF runs in either of your families. If so, you also may want to get genetic counseling.
  • You are: 
    • Caucasian. About 1 in 29 Caucasian Americans is a CF carrier. It’s most common in Caucasians whose families come from Northern Europe.
    • Hispanic. One in 46 Hispanics in the United States is a CF carrier.
    • African-American. One in 65 African-Americans in the United States is a CF carrier.
    • Asian American. One in 90 Asian Americans in the United States is a CF carrier.

Can you find out during pregnancy if your baby has CF or is a CF carrier? 

Yes. If you or your partner has CF or is a CF carrier, you can have a prenatal test to find out if your baby has the condition or is a carrier. You can have either of these tests:

  • Chorionic villus sampling (also called CVS). This test checks tissue from the placenta to see if a baby has a genetic condition, like CF. You can get CVS at 10 to 12 weeks of pregnancy.
  • Amniocentesis (also called amnio). This test checks amniotic fluid from around your baby in the uterus (womb) for genetic conditions, like CF. You can get this test at 15 to 20 weeks of pregnancy.

If you think your baby may have CF or be a carrier, talk to your provider or genetic counselor about these tests.

How is CF treated during pregnancy?

All of your providers work together to make sure your CF treatment is safe for you and your baby during pregnancy. Treatment can include:

  • Medicine, like antibiotics to treat infections
  • Inhalers to open the airways to the lungs and thin mucus
  • Chest therapy to help clear the airways to the lungs
  • A fitness plan
  • Supplements to help your body get nutrients that it may not be able to get from food

Most likely you can continue your regular CF treatment throughout pregnancy. But you may need to make some changes. For example, certain antibiotics that you take to treat infections may not be safe for your baby during pregnancy. So you may need to switch to a safer medicine. Or you may need to change the timing of certain treatments. Your provider team can help you make decisions about treatment that are best for both you and your baby. 

If you have CF, here’s what you can do to help you have a healthy pregnancy:

  • Get early and regular prenatal care and go to all of your prenatal checkups, even if you’re feeling fine. Prenatal care is medical care you get during pregnancy. At each visit, your prenatal care provider checks on you and your growing baby. At each visit, talk to your provider about your CF, your treatment plan and keeping your other providers informed about your prenatal care.
  • Tell your prenatal care provider about any medicine you take, even if it’s prescribed by another provider. Be sure any provider who prescribes you medicine knows that you’re pregnant. Don’t start or stop taking any prescription medicine during pregnancy without talking to your providers first. Stopping your medicine suddenly may cause severe problems for you and your baby.
  • Get regular treatment for CF. Don’t stop getting CF treatment because you’re going to your prenatal care checkups. You need to see both your prenatal provider and your CF providers throughout pregnancy. Your treatment for CF may need to change during pregnancy. So it’s important that all your providers monitor your CF closely throughout pregnancy.  

Can you breastfeed your baby if you have CF?

Yes. Even if you have CF, breast milk is good for your baby. But breastfeeding takes up a lot of energy and calories. So it may make it hard for you to get all the calories you need for both you and your baby. Work with your dietitian on a meal plan to make sure you get enough calories each day. 

You can pass medicine to your baby in breast milk. And some medicines may be harmful to your baby. So you may need to see about changing to a medicine that’s safer for your baby. Make sure your prenatal provider, your CF provider and your baby’s provider know about any medicine you take. Don’t start or stop taking any medicine without talking to your providers first. 

Talk to your provider team to decide if breastfeeding is right for you. 

More information

Cystic Fibrosis Foundation

See also: Cystic fibrosis and your baby, Newborn screening, Your family health history

Last reviewed: May, 2019