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Family Planning: The Next Generation

This section of Family Life is geared toward individuals and couples who are sexually active and who may consider having children in the future. If you don’t fall into either of these categories yet, it will most likely pertain to you eventually.

To learn more about transitioning to independence, go to Dating and Sex.

Be Genetically Aware

One day you might begin to think about having children. Knowing the genetics of your bleeding disorder will help you and your spouse determine the best course of action. When thinking about having children, you’ll probably need to consider not only the general responsibilities of parenthood but also how your chronic health condition will affect your family and what it will be like to raise a child with a chronic health condition.

You and your partner should discuss the possibility of passing a bleeding disorder on to your children. Having a child with a chronic health condition such as a bleeding disorder is a shift in what you might have thought to be your normal life, but it can be just as fulfilling as having a child without a chronic condition.

To learn more about the genetics of bleeding disorders, go to How Does a Person Get a Bleeding Disorder.

The Options for Having Children

There are many ways to create a family. Having a bleeding disorder doesn’t mean you must forego the joy of having a family. If you and/or your partner have a bleeding disorder, you may want to take advantage of genetic counseling, a service offered by many HTCs. In addition to helping you gather information and determining the best family planning options for you, genetic counseling sessions provide families a safe place and designated time to talk.

Hemophilia: The Genetics

If you and your partner wish to assume the risk of having a child with hemophilia, here are the possibilities:

  • If the mother is a hemophilia carrier and the father does not have hemophilia, there is a 50% (1 in 2) chance that each son or daughter will be a carrier of the hemophilia gene.
  • If the father has hemophilia and the mother is not a carrier, sons will not be born with hemophilia, but daughters will be carriers.
  • If the father has hemophilia AND the mother is a carrier, there are 4 possible outcomes, each with a 25% (1 in 4) chance of occurrence:
    • The child could be a son without hemophilia.
    • The child could be a son with hemophilia.
    • The child could be a daughter with hemophilia.
    • The child could be a daughter who is a carrier.
To learn more, go to How Hemophilia Is Inherited.

The challenges of having hemophilia (or being a carrier) can rise significantly when the possibility of having a child enters the picture. If you are concerned about the chances of having a child who has a bleeding disorder, you may want to consider the following:

  • For the woman who is a carrier:
    • You may choose not to have your own biological children. Instead, you may choose non-biological options, such as adoption or foster parenting.
    • You can choose to try to conceive using an assisted reproductive technology (ART) method. For example, you can try in vitro fertilization (IVF), using either your own egg(s) or donor egg(s). During some IVF procedures, preimplantation genetic diagnosis (PGD) testing can be performed to determine various genetic diseases and the sex of the embryo. That knowledge can be used to minimize the risk of having a child with a bleeding disorder.
    • You may choose to have tests performed early during pregnancy to determine if the fetus carries the gene for hemophilia. You can then consider whether to continue or terminate your pregnancy. Check with your doctor for the best time to do these tests.
  • For the man who has a bleeding disorder:
    • You may choose not to have your own biological children. Instead, you may choose non-biological options, such as adoption or foster parenting.
    • You may choose to use artificial insemination with donor sperm. If the mother is not a hemophilia carrier, then the child born will not have the hemophilia gene. (If the mother has a fertility problem, as well, donor sperm can be used in in vitro fertilization [IVF].) (This option assumes the donor does not have hemophilia.)
      • You may decide to have prenatal diagnosis performed and carry only a male fetus to term.
      • You may choose to try IVF and have preimplantation genetic diagnosis (PGD) testing done. You can then decide whether to transfer only male embryos or embryos determined to not carry the hemophilia gene.

Women and Bleeding Disorders

As a carrier, there are a few additional things you will want to think about when considering sexual relationships and starting a family. Menstruation and pregnancy can sometimes be hard on the body, and even more so if your clotting factor levels are low. This should not stop you from doing the things you want to do in life; you’ll just need to be aware of how to best care for yourself.

Menstruation

Monthly periods are never fun. A typical menstrual cycle lasts three to five days. However, for women with bleeding disorders, menstrual bleeding can be much heavier (called menorrhagia) and last for much longer.

Here are some signs and symptoms of menorrhagia:

  • Soaking through one or more sanitary pads or tampons every hour for several consecutive hours.
  • Needing to wake up to change sanitary protection during the night.
  • Bleeding for seven days or longer.
  • Menstrual flow including large clots.
  • Menstrual flow restricting lifestyle.
  • Fatigue or shortness of breath (symptoms of anemia).

If your period is interfering with your daily life, talk to your doctor. Heavy menstrual bleeding can be controlled in a number of different ways, including use of birth control pills.

Is it OK to take hormone therapy, such as birth control pills, If I’m not sexually active?

YES. Birth control pills and other forms of hormone therapy, such as patches, injections, and intra-uterine devices (IUDs) are sometimes prescribed to lighten periods and/or reduce menstrual cramps. Be certain to talk to your doctor to determine if hormone therapy is a safe and effective option to manage your periods. A variety of other options are available as well.

Some Tips for Managing Heavy Periods

  • When you’re away from home, keep extra underwear and pants with you—just in case.
  • Wear dark-colored pants. Wearing white can be risky!
  • Don’t wear your favorite underwear (or no underwear at all!) when your bleeding is heavy.
  • Set alarm clocks during the night to make sure you wake up to change protection.
  • For sleeping, place a dark-colored towel or an old blanket under you in case of leakage.
  • If you experience bad cramps, exercise helps. It’s also a good distraction from the pain.
For more helpful hints, go to Tips and Tricks for Managing Your Heavy Period.

Pregnancy

If you have a bleeding disorder and you and your partner decide to have your own biological children, you should be aware of how your pregnancy may be affected.

  • Know that your clotting factor level will determine your risk of bleeding complications during childbirth. To prepare for potential problems, both you and your medical team should be aware of your carrier status and clotting factor levels.
  • To determine if the baby has a bleeding disorder, the baby’s blood should be tested soon after delivery. If you have bleeding disorders in your family history, you should wait until the test result is provided to determine the circumcision procedure. About half of newborns with hemophilia will develop excessive bleeding following circumcision. Far fewer newborns with hemophilia will sustain a skull bleed, called intracranial hemorrhage, due to squeezing of the head during passage through the birth canal. Look for signs of bleeds, such as swelling and discoloration, so they can be stopped quickly.

Picking Your Gynecologist and/or Obstetrician

At some point, most women end up having sensitive conversations with their gynecologist or obstetrician. You want to make sure that the doctor you choose is not only competent and can address any complications that may arise because of your bleeding disorder but also is someone with whom you feel comfortable asking even the most intimate questions.

Here are some considerations when choosing a gynecologist:

  • How long the gynecologist has been in practice.
  • Where the gynecologist received training.
  • If the gynecologist is board certified.
  • If he or she has cared for other women with bleeding disorders.

Here are some considerations when choosing an obstetrician:

  • The hospital in which the obstetrician practices.
  • The tests they recommend for someone with your medical history.

Your Hemophilia Treatment Center (HTC) may be a good resource for finding gynecologists and obstetricians with experience caring for women with bleeding disorders.

Ask other women you know with a bleeding disorder to recommend a gynecologist.