Family planning and pregnancy for women with hemophilia

Women who are hemophilia carriers (women who have a gene mutation in one of their X chromosomes), may have mild bleeding symptoms due to reduced clotting factor levels in their blood. It is important to determine a woman’s carrier status in order to plan a safe pregnancy and childbirth.

Carriers should receive genetic counseling well in advance of a planned pregnancy about the risks of having a child affected by hemophilia. As soon as pregnancy is confirmed, the woman should consult an obstetrician (a physician who specializes in pregnancy and delivery), who should work closely with the staff of a hemophilia treatment center (HTC) to provide the best care during pregnancy and childbirth, and to minimize potential complications for both the mother and the newborn.

Before becoming pregnant, carriers need clear and accurate information about:

  • The chances of the child having hemophilia (carrier women have a 50% chance of passing the disorder to their children).
  • The consequences of inheriting hemophilia for both male and female children.
  • How hemophilia is treated, what care is available at a local level, and at what cost.
  • How pregnancy, labor and delivery should be managed to reduce risks to both the mother and the child
  • The options available for conception, prenatal diagnosis and fetal sex determination.

Most carriers have normal pregnancies without any bleeding complications. Levels of factor VIII increase significantly during pregnancy and reduce the risk of bleeding in hemophilia A carriers. However, factor IX levels do not rise during pregnancy. Factor levels should be tested in the third trimester of the pregnancy when they are at their highest. If the levels are low, precautions should be taken during labor to reduce the risk of excessive bleeding.

Pregnant carriers should avoid factor concentrates made from plasma because they may transmit parvovirus B19, also called fifth disease that may cause, albeit rarely, the baby to develop severe anemia and a miscarriage. Doctors may prescribe alternatives such as desmopressin, antifibrinolytic agents, or recombinant factor concentrates.

Conception options

In countries where high-quality care with safe clotting factor concentrates is available, it is easier to care for a child with hemophilia. But in places where adequate care is not available, families may choose alternatives such as adopting a child. Some families may use conception options that eliminate the risk of having an affected child. These options include in-vitro fertilization (IVF) with pre-implantation diagnosis, IVF with egg donation, or sperm sorting. However, these options may not always be available, or be unacceptable for religious, ethical, financial or cultural reasons.

Prenatal diagnosis

Couples who conceived naturally may want to know whether the child is affected by hemophilia before birth. A definitive prenatal diagnosis can be offered only with invasive procedures such as amniocentesis or chorionic villus sampling (CVS). The risk of miscarriage associated with these procedures is about 1%.  Some centers offer these procedures only if the couple plans to terminate the pregnancy if the fetus is found to have hemophilia, which may not be acceptable for religious, ethical or cultural reasons.

Fetal sex determination

Fetal sex determination, i.e., finding out whether the baby is a boy or girl, is a relatively simple procedure. Knowing the sex of the fetus does not tell if it is affected by hemophilia, but it does provide useful information. If the fetus is male, CVS or amniocentesis can be offered to parents who wish to know if it is affected with hemophilia. If a mother chooses not to have CVS or amniocentesis, or if these tests are not available, doctors should plan labor and delivery in a way to minimize the chance of bleeding in a male fetus. If the fetus is female, prenatal diagnosis is not necessary because even if the baby is a carrier there is very little risk of it bleeding during labor and delivery.

Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.