Sickle Cell Disease Pregnancy, Reproduction, and Sickle Cell Disease

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Sickle cell disease can affect sexual organs and other parts of the body in ways that affect quality of life and reproduction. 

Pregnancy puts extra stress on a woman’s body, raising the risk of sickle cell complications. Having sickle cell disease also raises the risk of problems with the pregnancy and with the developing baby.

Men with sickle cell disease are more likely to experience priapism, an erection lasting at least 4 hours. This can cause psychological distress and sexual dysfunction. It requires medical attention from a specialized healthcare provider called a urologist.

If you have biological children, they have a risk of inheriting sickle cell trait or sickle cell disease, depending on the other parent’s sickle cell status. Genetic counseling can help you make decisions about reproduction and plan for pregnancy.

For women with sickle cell disease, some birth control options are safer than others. Talk with your healthcare provider about the best option for you. 

Some types of birth control include the female  hormone  estrogen. Estrogen may raise your risk of stroke and blood clots. Talk to your healthcare provider about progesterone-only birth control. 

Women taking hydroxyurea should stop taking it before becoming pregnant, during the pregnancy, and while breastfeeding.

• You may have more pain crises before and during your period. Many women experience more sickle cell pain crises just before and during their period. 
• Heavy menstrual periods may raise your risk for anemia. Many women with sickle cell disease do not have heavy periods. But if you do, blood loss may raise your risk of iron-deficiency anemia. 

Preconception and prenatal care are key to managing risks to the pregnant person and the developing baby. 

As you plan for pregnancy or early in your pregnancy, work with your healthcare provider to:

• Confirm your own sickle cell status and the other parent’s. 
• Set up a plan for managing pain while pregnant or breastfeeding.
• Discuss genetic counseling to assess the sickle cell risk for your developing baby and future children.
• Start taking prenatal vitamins, including folic acid.
• Manage your medicines, especially pain medicines and hydroxyurea. People who are pregnant or planning to become pregnant should not take hydroxyurea.
• Have an echocardiogram to check your heart health.
• Have regular ultrasound scans to check the developing baby.
• Decide whether you should take low-dose aspirin (81 milligrams) starting around 12 weeks of pregnancy and continuing until giving birth.
• Check your blood pressure.
• Learn about prenatal testing as a way to see whether the developing baby has genes for sickle cell disease or trait.
• Decide whether to save the blood from your baby’s umbilical cord after they are born. This could potentially be used in a transplant for relatives who have sickle cell disease.

You may need one or more blood transfusions while pregnant to treat anemia and serious symptoms. Pregnant women have a higher risk of serious health effects caused by sickle cell disease, including:

• Pain crises
• Acute chest syndrome 
• Serious anemia
• Serious infections, including pneumonia and  sepsis (serious blood infection)

Sickle cell disease also raises the risk of some pregnancy-related complications:

• High blood pressure
• Venous thromboembolism
• Preeclampsia
• Urinary tract (bladder) infections

Talk with your provider about ways to lower the risk of these complications.

Your provider may recommend that you give birth in a hospital that is set up for high-risk pregnancies.

Vaginal birth is usually safe for women who have sickle cell disease. The provider will likely recommend fetal monitoring during labor and delivery to check the woman and the baby for complications.

Pregnant and Living with Sickle Cell Disease: A Push for Better Outcomes

NHLBI research revealed that Black women with sickle cell disease are at very high risk of serious complications and even death. Scientists are also learning about effective treatments to help pregnant people with sickle cell disease and their babies.

Read a story about one woman’s experience with pregnancy complications due to sickle cell disease.

After giving birth 

Healthcare providers encourage women to breastfeed their newborns for at least 6 months. Talk with your provider about the medicines you’re taking while breastfeeding to make sure they are safe. 

Before you leave the hospital, your baby will have a blood sample taken for newborn screening . If the screening shows that your baby has hemoglobin S or other abnormal hemoglobin, further testing will confirm the diagnosis. 

Infants whose mothers received opioid pain treatment regularly while pregnant should be checked for withdrawal symptoms.

Discuss birth control options with your provider. Certain hormone-based methods might not be safe for women with sickle cell disease.

Men may experience priapism — prolonged, painful erections. Sickle cell disease can also raise men’s risk of problems with fertility and sexual function. 

Up to 1 in 4 men with sickle cell disease experience problems that can affect fertility and sexual function, including:

• Lower than normal sperm count
• Erectile dysfunction 
• Low levels of the male hormone testosterone
• Low sex drive 
• Lower fertility