Hemophilia and pregnancy: What to expect

Planning a pregnancy with hemophilia can bring up a lot of questions. While many pregnant women with the condition don’t experience major complications, careful planning and comprehensive care are needed to ensure the best outcomes for you and your baby.

Learning about hemophilia and pregnancy, including the role of hemophilia treatment during pregnancy, can help ease potential uncertainty and support family planning with the disease.

Can women have hemophilia?

While hemophilia is often perceived as a condition that affects men, it can also occur in women.

Symptoms in women can range from mild to severe, which in part depends on the levels of clotting factors — proteins in the blood that help to form clots and stop bleeding. (Hemophilia A is caused by a deficiency in clotting factor VIII, whereas hemophilia B is driven by factor IX deficiency, and hemophilia C is marked by low levels of factor XI.)

Hemophilia symptoms in women may include:

• heavy menstrual bleeding
• easy bruising
• more painful swelling and bruising following injury
• prolonged bleeding after dental procedures, surgeries, and injuries
• severe bleeding after giving birth
• internal bleeding with very low clotting factor levels

Pre-pregnancy considerations

Women who are or may be carriers of hemophilia — which means they have the genetic mutation for the blood disorder — and those who have the disease should seek guidance from specialists before they become pregnant.

Building a reliable and knowledgeable care team in advance can help you make family-planning decisions with greater confidence. Some key members of your care team may include:

• Genetic counselors: An expert in genetic counseling for hemophilia can steer you toward the right testing options, as well as discuss hemophilia inheritance, and help you understand the risks of transmission to your children.
• Hematologists: A hematologist can assess your clotting factor levels and bleeding risks during pregnancy. They can also recommend adjustments to your care plan or replacement therapy if needed.
• Obstetricians: An obstetrician can answer questions about hemophilia and pregnancy, and provide high-risk pregnancy care, ideally in collaboration with a hemophilia treatment center. This approach can help prevent bleeding complications throughout pregnancy and delivery.
• Anesthesiologists: An anesthesiologist specializing in bleeding disorders can discuss managing pain during labor and delivery.

In addition, guidelines stress the importance of diagnosis for adolescent girls and women with a family history of inherited bleeding disorders, including von Willebrand disease, where the blood-clotting protein von Willebrand factor is missing or doesn’t work as intended.

This can enable health providers to estimate the chances of transmission to a woman’s children before she gets pregnant.

Pregnancy and hemophilia: Risks and management

Pregnancy with hemophilia requires comprehensive management and monitoring due to certain risks, such as an increased likelihood of bleeding complications.

An important aspect of care during this period is monitoring factor levels in pregnancy, as they may affect the risks of bleeding. 

According to the Centers for Disease Control and Prevention, the levels of factor VIII tend to rise during pregnancy. However, women with hemophilia A still have an increased risk of heavy bleeding after delivery because the levels decrease at this time.

And for women with hemophilia B, their levels of factor IX remain low throughout their pregnancy and after they give birth.

To ensure optimal care during pregnancy, schedule regular appointments with your healthcare team and communicate with them as needed. Be honest about how you feel and don’t hesitate to advocate for yourself.

Emotional and practical support during pregnancy

Pregnancy can be a time of joy and excitement, but it can also be a stressful experience. You may be anxious about potential pregnancy complications and the chances of passing hemophilia on to your child. Identifying sources of emotional and practical support can help you through these challenges.

Connecting with family and friends can be a good place to start when managing the emotional aspect of pregnancy with hemophilia.

For more extensive support or guidance on managing difficult emotions during this stage of life, consider consulting a therapist. They may be able to recommend specific techniques to help you feel more at ease.

Finally, you can join a support group, such as the Hemophilia News Today Facebook group, where you may be able to meet other women who can share their experiences with hemophilia and pregnancy.

Delivery considerations

Before you give birth, your care team can craft a delivery plan to meet your needs and manage potential delivery risks with hemophilia.

Some women with the condition may experience postpartum hemorrhage (prolonged bleeding from the birth canal). Your health providers may choose to monitor factor levels closely and recommend treatment to try to reduce blood loss during and after delivery.

Your doctors can also determine whether vaginal delivery or cesarean section may be safer for you and your baby. The use of forceps or vacuum extraction during vaginal delivery should be avoided if possible. 

Postpartum care and the baby’s health

After delivery, close monitoring by your care team can help support your and your baby’s well-being. At this point, close collaboration with a hemophilia treatment center is essential.

Monitoring your recovery

For new mothers with hemophilia, doctors often focus on detecting and addressing any potential blood loss and related complications. Additionally, women who had a cesarean section or experienced vaginal tearing during delivery require monitoring of wound healing.

Giving birth with hemophilia can also be emotionally challenging, so mental health support — whether through a hemophilia treatment center, a private therapist, or a support group — can be invaluable.

Newborn testing and follow-ups

Your baby should undergo newborn screening for hemophilia soon after birth. This is done by drawing a blood sample from the umbilical cord and testing it for clotting factor levels.

Early diagnosis is essential because it provides doctors with the information necessary to prevent potential bleeding complications. However, keep in mind that it’s not always possible to accurately diagnose the disease at birth. This means that tests have to be repeated when the baby is 6 months old.

Overall, pregnancy with hemophilia can come with extra challenges, but having a dedicated, knowledgeable, and compassionate care team can make a meaningful difference. With the right treatment, guidance, and social support, you can approach the postpartum period feeling more prepared, confident, and supported.