Family planning decisions can be challenging. Genetic counseling is a tool that may help assist individuals and families in understanding the genetic aspects of a bleeding disorder in order to make informed decisions about family planning.1
Genetic testing can often provide a genetic explanation for a disease. In some bleeding disorders, genetic testing of female relatives can also distinguish carriers and non-carriers.1
Genetic information also helps families and healthcare providers (HCPs) understand the probability of inheriting a bleeding disorder so that families can make informed decisions. It can also provide HCPs with information that can help them treat affected family members.1
People with a bleeding disorder may feel they need help understanding genetics and the impact a genetic disorder like hemophilia or von Willebrand disease (VWD) may have on life. That's where genetic counselors may be valuable. Genetic counselors are HCPs trained to help people understand genetic disorders and provide information and support to those who need it. Genetic counselors may also serve as patient advocates and refer individuals or families to local services.1
Most women with a bleeding disorder have few bleeding-related problems during pregnancy and childbirth. Levels of both factor VIII and von Willebrand factor (VWF) increase during pregnancy, which reduces the bleeding risk. For some women with a bleeding disorder, however, this increase is not enough to eliminate bleeding risk.2
Pregnant women with a bleeding disorder should meet with healthcare team members, including hematologists, obstetricians, anesthesiologists, and pediatricians before the delivery in order to plan for any possible issues that may arise. Treatment plans should be written, with a copy kept in the medical file and a copy kept by the expectant mother. It is recommended that clotting factor levels be measured during the third trimester as a guide for what to expect during delivery. Procedures to avoid in women with abnormal factor levels include an epidural, an unnecessary episiotomy, and a Caesarean section without prophylactic treatment.2
Pregnant women with a bleeding disorder should meet with healthcare team members before delivery and create a treatment plan.2
In carriers, the risk of bleeding within 24 hours after delivery is approximately 4 times higher than in the general population. There is also a risk for late postpartum bleeding (5-14 days after childbirth) in women with a bleeding disorder.2
Before you drop off your child with a bleeding disorder, check off a few things.
Whether at an event or online, get involved in the bleeding disorders community.
Hemophilia Treatment Centers (HTCs) provide a range of education and support services.