Family Planning
Whether you are a man or a woman with a bleeding disorder, or a carrier of a bleeding disorder, you may still plan on having a family. Having a bleeding disorder need not prevent you from having a family. However, it will take more planning and foresight than necessary in people without bleeding disorders.
This section of Sexual Health and Reproductive Issues will provide an overview on:
Researching and Discussing Options
The first step you need to take is to talk to your partner about what you want and what options are available to you. You may wish to follow your conversation with an appointment with your Hemophilia Treatment Center (HTC) staff and a genetic counselor to further clarify your options. In general, the options for couples in whom one or both individuals have a bleeding disorder include:
IUI bypasses the cervix and places the sperm directly into the uterus, where fertilization of the egg can take place.
IVF extracts both eggs and sperm from the individuals and combines them in a Petri dish, where fertilization may take place. The fertilized eggs, called embryos, may then be transferred into the woman's uterus.
- Traditional methods, in which unprotected sexual intercourse could lead to pregnancy.
- Reproductive technology, including intrauterine insemination (IUI) and in vitro fertilization (IVF).
- Adoption, a legal procedure in which the legal obligations and rights of the biological parents are terminated and new rights and obligations are created between the individual(s) who adopt the child. Many types of adoption options exist, including adopting a child domestically or internationally, as well as knowing the biological parent(s) (called an open adoption) or not (called a closed adoption).
Conception with HIV
Couples in which the man has a bleeding disorder and HIV may also have children.
Here are some available options:
- Sperm washing, in which sperm is separated from the seminal fluid that carries the HIV virus, is the first step. Then, through any one of several reproductive technology methods, the sperm is used to fertilize an egg, which may lead to a pregnancy.
- The washed sperm is placed into the woman's cervix, a procedure called intracervical insemination (ICI).
- The washed sperm is inserted into the woman's uterus, a procedure called intrauterine insemination (ISI).
- A single washed sperm is inserted into a single egg taken from the woman, an IVF procedure called intracytoplasmic sperm injection (ICSI). If fertilization takes place, the embryo is then transferred into the woman's uterus with the hope that a pregnancy will occur.
- Donor sperm, in which sperm from a man without HIV is then inserted into the female genital tract (either through artificial insemination, in which the sperm is placed inside the woman's vagina; or undergoes sperm washing and is used for intrauterine insemination [IUI] or to perform intracytoplasmic sperm injection [ICSI] and in vitro fertilization [IVF]).
- Pre- and post-exposure HIV prophylaxis,in which the HIV-negative partner takes antiretroviral medications for HIV before and after having unprotected sex with the HIV-positive partner. The intent is to suppress any virus in the semen. This is a very experimental option that only recently has gained support and is inadvisable unless the HIV-positive partner has an undetectable viral load, that is, no virus is detected in the blood as a result of HIV antiretroviral treatment.
Each option carries different risks and costs. Only some will be covered by insurance. Careful consideration is therefore essential. Talk to your insurer about what options are covered.
Preconception Counseling
Another consideration in family planning is genetic counseling, particularly for:
- Couples in which one or both partners have a bleeding disorder
- Carriers of hemophilia or other bleeding disorders
- Women who have a family history of bleeding disorders but do not know if they are carriers
- Women with severe bleeding disorders
Contact your HTC and consult a genetic counselor well in advance of trying to become pregnant. This way you may find out not only the risks involved for the woman who has, or is a carrier of, a bleeding disorder, but also any risk to the child of inheriting a bleeding disorder, or of a girl from a father with hemophilia, becoming a carrier.
Genetic testing may determine:
- Bleeding disorder carrier status
- Factor level of the mother
- Genetic mutation in the mother or father with a bleeding disorder
Having this information may help you make informed decisions regarding pregnancy, childbirth, and the care of your children.
Managing Pregnancy
Some women with a bleeding disorder may have fewer bleeds during pregnancy. This is because of the changes the body may undergo during pregnancy, which may trigger an increase in the levels of von Willebrand Factor (vWF), Factor VIII, and other clotting factors in the blood. Not all women with a bleeding disorder will be affected and, notably, factor IX does not increase with pregnancy. To find out about your risks and options, consult with a hematologist and an obstetrician who specialize in high-risk pregnancies to create a pregnancy management plan.
Talk to your doctors about the potential risks to the fetus from plasma-derived factor concentrates made from serum, and what risk you have of bleeding during and after the delivery. You should also talk with your hematologist about when and if caesarian section is advised for delivery. Because of the risk of a head bleed in a child with known hemophilia or a suspected male child in an identified or obligate carrier mother (the carrier of the defective gene), caesarian section has been suggested by experts in bleeding and obstetric disciplines.
The National Hemophilia Foundation's Medical and Scientific Advisory Committee (MASAC) has a recommendation you may wish to discuss with your medical provider: MASAC Document #192
MASAC Guidelines for Perinatal Management of Women with Bleeding Disorders and Carriers of Hemophilia A and B. The full guideline can be read on NHF's website.
Here are some other considerations to discuss with your doctor about delivery:
- Caesarian section (called C-section) is a surgical procedure and may require treatment to raise factor levels prior to the procedure.
- Suction tools and forceps should not be used during the delivery if the fetus is known to be, or at risk of, having hemophilia or another severe bleeding disorder.
- Unnecessary episiotomy should be avoided because it may cause bleeding.
- Pain management during labor: some approaches require certain levels of clotting factors.
