When Your Child Has Hemophilia

Hemophilia is an inherited blood disorder. It occurs when your child is missing proteins called clotting factors in the blood. Clotting factors work with blood cells called platelets to control bleeding. Hemophilia is very serious and must be treated. Your child’s healthcare provider can discuss treatment options with you.

What causes hemophilia?

Hemophilia is passed from parent to child. It is much more common in males than females. This is because the gene involved is linked to gender. Parents and siblings of a child with hemophilia should be tested for the condition. A genetic counselor can answer questions you may have.

What are the types of hemophilia?

There are different types of hemophilia based on the clotting factor involved. The most common types are:

• Hemophilia A (also called “classic hemophilia” or factor VIII (8) deficiency). This type occurs when there is little to no factor 8.

• Hemophilia B (also called “Christmas disease” or factor IX (9) deficiency). This type occurs when there is little to no factor 9.

What are the signs and symptoms of hemophilia?

• Excessive bruising or bleeding after an injury or surgery

• Bleeding gums

• Nosebleeds that won’t stop

• Bleeding from a wound that stops and starts again

• Swollen joints

How is hemophilia diagnosed?

Your child will likely see a pediatric hematologist. This is a doctor who specializes in blood disorders (hematology). The doctor will examine your child and ask about symptoms and health history. He or she will also want to know if you have a family history of blood disorders or excessive bruising or bleeding. The following tests may also be done:

• Coagulation tests to check the clotting process in your child’s blood. These can include the prothrombin (PT) test and the partial thromboplastin time (PTT) test.

• Blood tests to measure the amounts of specific clotting factors in the blood.

Based on the test results, the doctor can tell what type of hemophilia your child has and grade it. Grades are mild, moderate, or severe. The grade is determined by the amount of factor in the blood.

• Mild hemophilia: Child makes more than 5% of the normal amount of factor.

• Moderate hemophilia: Child makes 1% to 5% of the normal amount of factor.

• Severe hemophilia: Child makes less than 1% of the normal amount of factor.

How is hemophilia treated?

Treatment depends on the type of hemophilia your child has, the grade, and if it causes other health problems. Possible treatments include:

• Replacement therapy. With this treatment, the missing amount of factor is replaced in the blood. It may be needed during a bleeding episode. It may also be given on a schedule to help prevent bleeding episodes. This treatment can be done in a hospital, a hematology center, or a clinic. It may also be done at home. If you choose to give this treatment yourself, trained healthcare providers will teach you and your child.

• Medicine called desmopressin (DDAVP) may be prescribed for children with mild to moderate forms of hemophilia A. It can help raise the amount of factor 8 in the blood.

What are the long-term concerns?

• Hemophilia is a lifelong condition. Regular doctor visits are needed for routine checkups, tests, and vaccinations.

• Your child will need to wear an emergency medical bracelet and carry a medical card with information about his or her condition.

• Work closely with the doctor to learn how to help your child. Follow all instructions about how to reduce the risks of bleeding and possible problems. For instance, your child may have to avoid certain activities. He or she may also need to take medicines before dental work or certain procedures to help control bleeding.

Coping with your child’s condition

As much as you can, keep a positive outlook. Counseling can help you and your child cope with worries or concerns. Seek help from family, friends, community, or support groups. And check whether your local hospital has a child life program. This helps children cope with illness. A hospital social worker can also answer questions and refer you to other support services. The more you learn about your child’s condition, the more in control you may feel.