Sickle cell disease and pregnancy

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Sickle cell disease is a condition in which the red blood cells in your body are stiff and shaped like a sickle. This is an inherited disease originally related to protection from malaria in tropical zones.

Red blood cells carry oxygen to the rest of your body. When the red blood cells are stiff and misshapen, they can block blood flow. This can cause pain, infections and, sometimes, organ damage and strokes.

Sickle cell disease may lead to anemia, which means you don’t have enough healthy red blood cells to carry oxygen to the rest of your body.

Sickle cell disease in pregnancy is high risk for the mother and the baby and can lead to miscarriage, prematurity and more frequent sickle cell crises in the pregnant person.

What causes sickle cell disease?

Sickle cell disease is inherited. This means it’s passed from parent to child 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.

Sometimes the instructions in genes change. Parents can pass gene changes to their children. A gene change can cause a gene to work incorrectly. Sometimes it can cause birth defects or other health conditions. To have sickle cell disease, you have to inherit a gene change for sickle cell from both parents. If you inherit the gene change from just one parent, you have sickle cell trait. This means that you have the gene change, but you don’t have sickle cell disease itself. When this happens, you’re called a carrier.  If your partner is also a carrier, your child can inherit sickle cell disease.

Sickle cell trait cannot become sickle cell disease. Some people with sickle cell trait show signs of sickle cell disease, but this is unusual. Most don’t.

Can you pass sickle cell disease or sickle cell trait to your children?

Yes. But it depends on both you and your partner. If you and your partner both have sickle cell disease, your baby will have sickle cell disease.

If you and your partner both have sickle cell trait, there’s a:

  • 3-in-4 chance (75 percent) that your baby won’t have sickle cell disease
  • 1-in-2 chance (50 percent) that your baby will have sickle cell trait
  • 1-in-4 chance (25 percent) that your baby will have sickle cell disease
  • 1-in-4 chance (25 percent) that your baby won’t have sickle cell disease or sickle cell trait

If only you or your partner have sickle cell trait, your baby won’t have sickle cell disease but may have sickle cell trait.

A genetic counselor can help you understand your chances of passing sickle cell disease or sickle cell trait 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. Often the prenatal care system where you are receiving care will have genetic counselors on staff and you can be referred for counseling and testing if needed.

How can you find out if you have sickle cell disease or sickle cell trait?

Two types of tests can tell you if you have sickle cell disease or sickle cell trait. Both are safe to take during pregnancy. Your partner can have the tests, too.

  1. A blood test called hemoglobin electrophoresis will tell you the red blood cell chains you have. This is often done routinely at the start of prenatal care.
  2. A swab of cells inside your mouth.

You and your partner may want to be tested if:

  • Sickle cell disease or sickle cell trait runs in your families. To help you find out, take your family health history and share it with your health care provider.
  • One of you knows that you have sickle cell trait or you test positive in the pregnancy
  • You are Black or Hispanic, or your family’s ancestors are from Africa, the Caribbean, Greece, India, Italy, Malta, Sardinia, Saudi Arabia, Turkey and South and Central America. In the United States, about 100,000 people have sickle cell disease. Of these, about 90 percent are Black and 10 percent are Hispanic.

Talk with your provider or genetic counselor if you’re thinking of having either of these tests.

Can sickle cell disease cause problems during pregnancy?

With regular prenatal care, most women with sickle cell disease can have a healthy pregnancy. However, if you have sickle cell disease, you’re more likely than other parents to have health complications that can affect your pregnancy. These complications include pain episodes, infection and vision problems.

During pregnancy, sickle cell disease may become more severe, and pain episodes may happen more often. Pain episodes usually happen in the organs and joints. They can last a few hours to a few days, but some last for weeks.

During pregnancy, sickle cell disease may increase your risk of:

How is sickle cell disease treated during pregnancy?

If you have sickle cell disease and you’re pregnant or planning to get pregnant, talk to your health care provider about the medicines you’re taking. Your provider may change your medicine to one that’s safe for your baby during pregnancy.

For example, hydroxyurea is a medicine that may help prevent red blood cells from sickling. It’s used to treat sickle cell disease pain episodes. However, it isn’t recommended during pregnancy because it may increase the risk of birth defects.

Your provider also can treat other problems related to sickle cell disease and pregnancy. For example, your provider can help you find safer ways to treat pain episodes.

When you have sickle cell disease it is important to start prenatal care early and to go to your provider or the hospital as soon as possible if you experience a crisis. 

You will also need ongoing care by a Maternal Fetal Medicine Provider who provides care in high risk pregnancies.

More information

See also: Genetic counselingYour family health historyNewborn screening

Last reviewed: January 2024