The decision to have a baby is personal and informed by elements unique to each woman. For women with bleeding disorders, their condition is likely one of the major factors to consider. Many wonder, “Is a safe pregnancy and a healthy child in my future?”
With planning and a good team on your side, the answer is very likely yes, says Danielle Nance, MD, a hematologist at Banner MD Anderson Cancer Center in Gilbert, Arizona. “Many women will need treatment to control bleeding in order to get pregnant, as well as treatment during pregnancy,” she says.
“Every couple and every pregnancy is different, so each woman needs to have a personalized assessment in order to achieve a healthy pregnancy,” Nance adds. Here’s what women who are thinking about getting pregnant should consider.
To better understand why you have your bleeding disorder—and how your child could be affected—Nance recommends genetic testing and counseling. If you have hemophilia A or B, you need only a single copy of the defective gene to experience bleeding symptoms, she explains. “For the even more rare factor X, factor VII or factor XIII, you’ll have two copies of the broken genes if you have bleeding symptoms,” she says. The same is true for type 3 von Willebrand disease. Knowing your genetic information and your partner’s will help you figure out your odds of passing on the disorder, so you can be more prepared.
That was the case for Felicia Bates, a mom of four boys in Williamsville, New York, and a carrier for hemophilia A. Knowing the risks going in didn’t stop her, but it did give her forewarning. “I knew my children could end up with a bleeding disorder, and three of my four sons do have one, but I also knew I had a higher risk of a complicated delivery,” Bates says. Her pregnancy entailed more care, visits and tests, but she says she wouldn’t change a thing.
Going off birth control
Hormonal birth control allows many women with bleeding disorders to better manage heavy periods. In the past, concerns over menstrual bleeding as a result of stopping hormonal birth control led many physicians to advise women against getting pregnant—and some women today are still afraid to try. But menstrual bleeding now can be more easily and safely managed, says Shaveta Malik, MD, co-director of the Specialized Hematology Experts (SHE) Clinic at the Hemophilia Center of Western New York, in Buffalo.
If you plan to conceive, see your gynecologist and hematologist for preconception counseling. At these appointments, you may discuss medication to help decrease menstrual bleeding, such as Lysteda (tranexamic acid), which can be safely taken for five to seven days during your period; factor replacement; and ways to more accurately pinpoint fertility, such as ovulation predictor kits, which can help you get pregnant sooner.
Taking care of yourself once you’re pregnant
Every pregnant woman should practice good self-care, but a woman with a bleeding disorder should be extra vigilant. “Yours is considered a high-risk pregnancy,” Nance says. If you have a physically demanding job, you may need to take a lighter schedule or stop working. Should a problem arise, such as heavier-than-typical bleeding, you may be put on bed rest. You should be cared for by your hematologist and a maternal-fetal medicine doctor, who specializes in high-risk pregnancy. It’s best to deliver at a hospital that has a blood bank onsite.
If you’re feeling anxious, take heart: “I reassure women that I have plenty of experience with caring for women like them who have had successful pregnancies and beautiful, healthy babies,” Malik says. If you experience any issues, call your doctor; he or she may have you come in for additional testing, such as blood work or an ultrasound. Also, be aware that your bleeding risk, and your risk of miscarriage, decreases as your pregnancy progresses, because physiological changes of pregnancy increase factor levels in most patients with a bleeding disorder, Malik says.
Overall, the most important thing you can do when planning a pregnancy is to be open and honest with your doctor and constantly advocate for yourself. If you have concerns, ask questions until you feel you have the answers you need. “We have great technology and medications, and we can help most women have successful pregnancies and good outcomes,” Malik says.
Steps for Living’s Family Planning for the Next Generation
Find a directory of hemophilia treatment centers that offer women’s services, from the Foundation for Women & Girls with Blood Disorders