You may wonder about pregnancy and the postpartum period and how your bleeding disorder can influence these. Maybe you have questions about symptom management. You could also be thinking about other options for having a family. This section talks about things to think about and options for the future.
This section of Pregnancy Options will cover:
Preconception Care: Researching and Discussing Options
Managing Pregnancy: Before, During, and After
Preconception Care: Researching and Discussing Options
It is never too early to start thinking about your family planning options. There are many ways to create a family. You can get pregnant naturally. You may also want or need medical help to get pregnant, which includes options such as via in vitro fertilization (IVF) and intrauterine insemination (IUI). You can also have a family through another person carrying and giving birth to a baby for you (surrogacy). Adoption and fostering are two other options. Which way you decide, if any, is a very personal and individual decision. It may seem overwhelming. One step to start is to gather as much information as you can. One of the best ways to do this is to talk with your Hemophilia Treatment Center (HTC) or health care provider team. You can discuss your needs and learn what options are best for you.
Who do I reach out to?
If you go to an HTC, you want to talk to a hematologist and a genetic counselor. You may want to also talk to a provider for high-risk pregnancies, also called a Maternal Fetal Medicine provider. These providers are obstetrician-gynecologists (OB/GYNs), who specialize in complex pregnancies.
It is important to note that some bleeding disorders, such as factor XIII (13) deficiency (also known as fibrinogen deficiency), can increase the chances of miscarriage and recurrent pregnancy loss.4 Knowing your risk can help you and your health care team decrease the chances of miscarriage if you become pregnant.
A bit more about genetic counseling
When thinking about building a family, you are not only thinking of how your decisions will impact you or your partner but also your future child or children. This is why meeting with a genetic counselor is such an important step when exploring options.
Genetic testing may determine:
- Bleeding disorder carrier status
- Factor level of the pregnant person
- Genetic mutation in the parent with a bleeding disorder
In addition to helping with family planning options, genetic counseling sessions can give you a safe place and designated time to talk and get questions answered.
If you want more information about the genetics of bleeding disorders, please got to How Does a Person Get a Bleeding Disorder.
If you want more information about how genetic testing works, please go to Carrier Testing.
Options for Having Children
There are many ways to create a family. How you decide to have a family is a personal and individual decision. Below are some options to consider:
Most couples are able to become pregnant without the need for medical interventions. It is also possible for people with bleeding disorders to conceive naturally.
In an IUI, a health care provider places washed sperm (your partner’s or a donor’s) directly into your uterus via a catheter. Sperm washing separates the sperm from the fluid (semen) and eliminates immobile and slow swimming sperms. This will make it easier for the sperm to fertilize the egg. The procedure is planned to line up exactly with your ovulation. Many health care providers will use an injection of human chorionic gonadotropin (HCG) called a trigger shot, to get the timing of ovulation exact6.
The process is usually overseen by a Reproductive Endocrinologist. However, it is important to also work with your hematologist to account for your bleeding disorder while having an IUI.
If you want more information about IUIs, please go to the American Society for Reproductive Medicine Fact Sheet.
This option includes any treatment for fertility involving eggs or embryos that are handled outside of the body. One of the most well-known types is in vitro fertilization (IVF). IVF is often used when there are difficulties getting pregnant or when they want to prevent passing on genetic diseases.
In IVF you can use your own genetic material and have it tested. The tests will show you if the embryo is affected by a bleeding disorder. You also have the option of using eggs or sperm given by someone else (donor eggs or donor sperm)1.
If using your or your partner’s own eggs, you will go through a complex process. The first part is to use medication to get the ovaries to produce many eggs at once (induced ovarian stimulation). Once retrieved, the eggs are fertilized in a lab by your or your partner’s sperm or donor sperm. The lab lets the fertilized eggs grow for 5-7 days, which is when they become an embryo. Some stop growing before they make it to this stage1.
Once you have embryo(s) you can have the lab take a biopsy. The sample is assessed with a genetic test called PGT-M (formerly PGD). This will let you know if the embryo has a gene for a bleeding disorder. You can then make decisions about which embryos you want to put back into your or your partner’s body.
IVF is a complicated process usually overseen by a fertility provider called a Reproductive Endocrinologist. Make sure your reproductive endocrinologist and your hematologist are collaborating on your care. Together they can create a plan that minimizes any risks of bleeding1.
If you want more information about ART, please go to the American Society for Reproductive Medicine Patient Guide.
For some people, surrogacy is the right option for having a family. Surrogacy is when someone else carries your baby in their uterus for you. Your baby may be genetically related to you or your partner. You can also use donor eggs and/or donor sperm.
If using your or your partner’s genetic material, you would go through the IVF process. However, instead of placing an embryo into your or your partner’s uterus, you would transfer it into a surrogate’s uterus. If you are using donor eggs or sperm, you would place the created embryo into your surrogate’s uterus.
You can find a surrogate through an agency or fertility clinic. Sometimes people choose someone they already know, such as a family member or friend. The surrogate goes through extensive medical and psychological evaluations before they are accepted as a surrogate. The surrogate, you, and your partner will most likely also go through legal processes to create an agreement. This agreement covers expectations before, during and after pregnancy.
The process of adoption can be lengthy. Usually, you use an adoption agency to pursue this process. Choosing the right agency is a big decision.
Adoption can also be something that you decide to do after fostering a child. Adoption itself is a legal procedure where the legal obligations and rights of the biological parents are terminated. Then new rights and obligations are created for the people who adopt the child.
Many types of adoption options exist, including adopting a child domestically or internationally. Some adoptions allow the child and the biological parents to know each other (open adoption) others will not include this option (closed adoption).
Foster care is temporary care for children who cannot live with their biological families. It is arranged by the state level government. Foster care can include placement with relatives, unrelated foster parents, group home settings, supervised independent living, or other facilities.
If you are looking to be a part of foster care, you must first go through a licensing and/or approval process by the state level government. This process can vary depending on the state you live in.
If you are a foster parent, you not only provide care for a child, but you may also work with their families, school, and other community resources to support a child5.
The National Foster Parent Association has information about foster care, and the State, Territory, and Tribal Resources section of the Child Welfare Gateway has foster care related information by state.
Conception With HIV
Partners where one person has a bleeding disorder and HIV can also have children. The following options will help preventing passing HIV on to the baby or the partner.
The HIV-negative partner should take antiretroviral medications for HIV before having unprotected sex with the HIV-positive partner. This is called pre-exposure prophylaxis or PrEP. PrEP significantly decreases the chances of getting infected with HIV3.
The HIV positive partner should take antiretroviral medication for HIV. This is called treatment as prevention (TasP). TasP decreases the viral load, which reduces the risk of transmitting the virus2.
Sperm is separated from the fluid around the sperm (semen). The fluid is what carries the HIV virus. Then, through any one of the following methods, the sperm is used to fertilize an egg. Once the egg is fertilized it may lead to a pregnancy.
The washed sperm is placed into the cervix, a procedure called intracervical insemination (ICI). The washed sperm can also be inserted into the uterus, a procedure called intrauterine insemination (IUI). Or a single washed sperm is inserted into a single egg. This is an IVF procedure called intracytoplasmic sperm injection (ICSI). If fertilization takes place, the embryo is then transferred into the uterus8.
Sperm from a donor is inserted into the genital tract. The sperm can be placed inside the vagina. The sperm can also be sperm washed and used for intrauterine insemination [IUI]. Or a single washed sperm can be inserted into a single egg (ICSI) and then transferred into the uterus.
Each option carries different risks and costs. Only some will be covered by insurance. Thinking through the options is important. Talk to your HTC team or other health care provider about what option is best for you.
Managing Pregnancy Before, During, and After
Your Health Care Team
When thinking about starting a family in the presence of a bleeding disorder, it is important to have an interdisciplinary health care team by your side. This team will work closely with you to create a personalized plan of care. Some health care providers to include are a hematologist, genetic counselor, obstetrician/gynecologist (OB/GYN), maternal fetal medicine (MFM) provider, and reproductive endocrinologist (if needed). Ideally you will meet with these providers to go over risks, answer questions, and address concerns before getting pregnant7.
Once you’re pregnant and preparing for delivery, you should talk to additional health care providers, like an anesthesiologist and your child’s future pediatrician. Ensuring all of these providers are familiar with bleeding disorders and are collaborating together is important7.
During Pregnancy
Your body will undergo many changes during pregnancy and some of these are directly affecting your bleeding disorder. Pregnancy can increase amounts of fibrinogen, von Willebrand Factor (VWF), factor VII (7), factor VIII (8), and factor X (10), especially in the last trimester. Factor IX (9), however, does not increase with pregnancy. It is recommended to assess factor levels in the third trimester to prepare for treatment during and after childbirth. This can decrease potential bleeding4,7.
During pregnancy, you can receive tests to find out if your baby has a bleeding disorder. For one test, a small sample is taken from the sack around the baby. This is called amniocentesis. Another test takes a sample of the placenta and is called chorionic villus sampling (CVS). There can be risks associated with these tests, so it is important to talk with your health care team. They can help you create a plan that everyone is comfortable with4,7.
Preparing for Delivery
If you are pregnant and have a bleeding disorder, you are at risk of bleeding complications during labor and delivery and after the baby is born. It is important to have a plan of care in place early on in your pregnancy. Your health care provider team will help create a plan that will keep you and your baby safe and comfortable. If your baby might have a bleeding disorder, you should also talk to a health care provider specialized in caring for babies with complex or high-risk health concerns, called a neonatologist7.
Here are some other considerations to discuss with your health care team:
You should give birth at a hospital that has access to essential health care providers, such as a hematologist, OB/GYN, and neonatologist. The hospital should also have an appropriate laboratory to assess your and your baby’s blood as needed, pharmacy, and transfusion services. Additionally, your needed medication should be stocked and available7.
It is possible for people with bleeding disorders to receive pain management during labor and delivery. This does include procedures, such as an epidural. The risks and benefits should be discussed with your hematologist, OB/GYN, and anesthesiologist. A detailed plan should be created before you begin labor7.
This is a surgical procedure, and you may need additional medication to limit bleeding. While it is possible for people with bleeding disorder to deliver a baby vaginally, your OB/GYN may prefer a planned C-section, especially if your baby might have a bleeding disorder. This is to prevent bleeding in the baby7.
These should not be used during the delivery if the baby is known to be, or at risk of, having a bleeding disorder. These can lead to bleeding in the baby7.
This attaches an electrode to the head of the baby to monitor their heartbeat. If your baby is known to or might have a bleeding disorder, this should be avoided, because it can lead to bleeding in the baby7.
These are cuts to the vaginal opening during childbirth. Episiotomies should be avoided because it may cause bleeding7.
If there is any possibility that your baby might have a bleeding disorder, make sure to talk to your health care team about the process. Some procedures after birth, such as circumcisions, can lead to bleeding in babies with bleeding disorders. Knowing your baby’s status will help you make the best decisions for them7.
After Delivery
While some factor levels can increase during pregnancy, they decrease upon delivery. It is important to plan for how to address bleeding after delivery (this is called the postpartum period). Excessive bleeding after delivery, called postpartum hemorrhage, is a serious concern that you should talk about with your health care team. While many hemorrhages happen in the first week, it is not uncommon for people with bleeding disorders to experience these more than 2 weeks after the baby was born7.
If you want more information on the specific recommendations for pregnant people with bleeding disorders, please go to MASAC Document 265.
- Assisted Reproductive Technologies. ASRM. (n.d.). Retrieved March 7, 2023, from https://www.asrm.org/topics/topics-index/assisted-reproductive-technolo…
- Cambiano, Bruun, T., Degen, O., Geretti, A. M., Raben, D., Coll, P., Antinori, A., Weber, R., Van Eeden, A., Raffi, F., Wandeler, G., Gerstoft, J., Kitchen, M., Leon, A., Lundgren, J., Meulbroek, M., Carrillo, A., Guerrero, J. D. R., Gutiérrez, F., … Estrada, V. P. (2019). Risk of HIV transmission through condomless sex in serodifferent gay couples with the HIV-positive partner taking suppressive antiretroviral therapy (PARTNER): final results of a multicentre, prospective, observational study. The Lancet (British Edition), 393(10189), 2428–2438. https://doi.org/10.1016/S0140-6736(19)30418-0
- Centers for Disease Control and Prevention. (2022, June 6). Prep effectiveness. Centers for Disease Control and Prevention. Retrieved March 6, 2023, from https://www.cdc.gov/hiv/basics/prep/prep-effectiveness.html
- Ebrahim, Kulkarni, R., Parker, C., & Atrash, H. K. (2010). Blood disorders among women: implications for preconception care. American Journal of Preventive Medicine, 38(4 Suppl), S459–S467. https://doi.org/10.1016/j.amepre.2009.12.018
- Family foster care. Family Foster Care - Child Welfare Information Gateway. (n.d.). Retrieved March 7, 2023, from https://www.childwelfare.gov/topics/outofhome/foster-care/fam-foster/
- IUI (intrauterine insemination): What it is & what to expect. Cleveland Clinic. (n.d.). Retrieved March 7, 2023, from https://my.clevelandclinic.org/health/treatments/22456-iui-intrauterine…
- MASAC (2021, March 4). MASAC Document 265 - MASAC Guidelines for Pregnancy and Perinatal Management of Women with Inherited Bleeding Disorders and Carriers of Hemophilia A or B. National Hemophilia Foundation. https://www.hemophilia.org/healthcare-professionals/guidelines-on-care/masac-documents/masac-document-265-masac-guidelines-for-pregnancy-and-perinatal-management-of-women-with-inherited-bleeding-disorders-and-carriers-of-hemophilia-a-or-b
- Zafer, Horvath, H., Mmeje, O., van der Poel, S., Semprini, A. E., Rutherford, G., & Brown, J. (2016). Effectiveness of semen washing to prevent human immunodeficiency virus (HIV) transmission and assist pregnancy in HIV-discordant couples: a systematic review and meta-analysis. Fertility and Sterility, 105(3), 645–655.e2. https://doi.org/10.1016/j.fertnstert.2015.11.028