Caring for your baby girl with a family history of hemophilia

Your baby girl has a history of hemophilia in her family.  It is important to find out how this family history can affect her health.  The Indiana Hemophilia and Thrombosis Center (IHTC) is here to help you in that process.

Genetic Inheritance

  • If the father has hemophilia – your baby girl will inherit the changed gene and will be a carrier of hemophilia. Being a carrier means that if she has children someday, she could pass this gene on to them. Her factor level may or may not be normal.
  • If the mother is a carrier – your baby girl may inherit the changed gene and could be a carrier of hemophilia.  Her factor level may or may not be normal.

Testing

  • Usually, IHTC does not do hemophilia testing on a newborn girl. 
  • At some point, however, your daughter should have genetic testing to find out if she is a carrier. This is done by a blood test. The IHTC genetic counselors are available to discuss genetic testing with you.  Results will provide valuable information in planning future medical care.  Sometimes IHTC may contact you to discuss testing and offer testing opportunities.
  • Your daughter should have her factor level checked. This is done by a blood test. Call IHTC to schedule a factor level test.

When You Should Contact IHTC

Please contact the IHTC for any questions or concerns. Example of times you may need to call for help, include:

  1. If your baby girl needs a surgery or other procedure. It’s best to let us know before the surgery so we can help plan for any medicines your baby girl may need to prevent problems during or after surgery.
  2. If your baby girl gets hurt.
  3. If your baby girl has bruising or bleeding concerns.
  4. If you notice your baby girl is not developing as you would expect.