a pregnant woman holding her stomach which has a question mark on it

What to Know When Planning to Have a Baby

Most women with sickle cell disease (SCD) have safe and healthy pregnancies. However, women with SCD do have a higher risk of having complications during pregnancy. SCD also increases the risk of pregnancy-related issues for the mother and the baby.1

Pre-pregnancy planning and close monitoring during pregnancy can reduce the risk of complications. Talk to your doctor if you plan to have a baby. They can make changes to your treatments and advise you how to stay healthy during the pregnancy.

Does pregnancy increase the risk of sickle cell disease complications?

Pregnancy does increase the risk of SCD complications, including:2-4

  • Worse anemia
  • Blood clots
  • Infections
  • More frequent pain crises
  • Acute chest syndrome
  • Stroke

Your baby will be tested for SCD after birth. Before becoming pregnant, ask your doctor or a genetic counselor about the risk of your baby having SCD. This depends on your SCD status and the father’s SCD status. If your baby is diagnosed with SCD, they will give you resources to help you prepare.5

Does sickle cell disease increase the risk of problems during pregnancy?

Women with SCD are more likely to have problems during pregnancy than women without SCD, including:2,4,6

  • Having babies who are smaller during pregnancy and at birth
  • Birth defects in the baby
  • Going into labor prematurely
  • Delivery via a cesarean section (C-section)
  • Pregnancy loss or miscarriage
  • High blood pressure during pregnancy (preeclampsia)

How can I reduce the risk of complications during pregnancy?

Despite the risks, women with SCD can have a safe pregnancy. Early care and monitoring throughout the pregnancy can keep you and your baby healthy. If you want to have a child, talk to your doctor about how to prepare. They will give you steps to take before pregnancy, including:2,3,5

  • Stopping hydroxyurea months before trying to get pregnancy or as soon as you become pregnant
  • Stopping other medicines, such as iron chelation therapy and ACE inhibitors
  • Getting vaccinations or vaccine boosters
  • Taking additional nutritional supplements, such as folic acid

Once you are pregnant, your doctors will give you special care to help you and your baby stay healthy. This may include:2,7,8

  • More frequent doctor’s visits, especially during the first 2 trimesters
  • Changes to your treatment, such as more blood transfusions
  • More tests to make sure your baby is getting enough oxygen
  • Changes to pain medicines

Avoid triggers of acute pain episodes, such as high altitudes, sudden temperature changes, dehydration, and intense exercise. Maintaining good habits can also keep you and your baby as healthy as possible.2

After you give birth, your doctors will still monitor you for complications, especially if the baby was delivered via C-section. Your doctors will determine when you can resume treatments that were paused. This decision may depend on whether you are breastfeeding.5

Where can I get resources to help make reproductive decisions?

The decision of whether to have a baby is a personal one. You are the expert on your own health and body. Doctors can make you aware of your reproductive options, inform you of the risks associated, and answer your questions. It is ultimately your choice, and it is up to them to support your decision.

Before becoming pregnant, talk to your doctor about your options. Ask them how pregnancy would affect your health and your healthcare, and what risks it would pose to the baby. They will review your medical history and perform tests to assess the risks.3,5

Your doctor may also refer you to a genetic counselor. This specialist can discuss the risk of your baby inheriting SCD. You can also choose to have your baby diagnosed before birth. During your pregnancy, you will receive care from a diverse team of doctors. The team will include doctors knowledgeable about SCD and high-risk pregnancies.5,7

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