When it comes to genetic counseling, one of your best resources is your nearest hemophilia treatment center (HTC). Today, 26 major HTCs receive grants that they use to support 124 affiliate and satellite centers through a regionalized system of care. The HTC in your area can offer a variety of genetics-related services, including:
- Genetic testing
- Genetic counseling
- Carrier screening
- Early disease identification
- Discussion and implementation of intervention options
- Coordinated care
The HTC team can provide support to you and your spouse from the beginning—in many cases, even before a child is born. HTC staff can begin genetic counseling for people with hemophilia in their family to identify potential carriers. Women who are possible carriers of hemophilia could then choose to undergo genetic testing before pregnancy.
Once a woman is pregnant, knowing her carrier status in advance can help her and the HTC staff prepare for the safe delivery of the child. The HTC can make specific recommendations to the obstetrician. For example, HTC staff can advise the mother to have an ultrasound to determine the sex of the baby. If it’s a boy, HTC staff can closely monitor the pregnancy and recommend helpful tests, such as obtaining a sample of the child’s cord blood.
HTC staff also can discuss post-delivery options. For example, circumcision carries a risk of bleeding in boys with hemophilia and should not be performed unless the diagnosis of hemophilia has been ruled out.
The resources, education, and support you’ll find at your HTC make it one of the first places you should visit to learn more about genetic counseling—or any aspect of living with hemophilia. (For more information on the services hemophilia treatment centers provide, see our featured topic, Hemophilia Treatment Centers.)