Hemophilia in Children

Hemophilia in Children

Hemophilia is a bleeding disorder that prevents blood from clotting properly. This means that it is harder for a person’s body to stop bleeding. Hemophilia is a lifelong condition that usually starts in childhood.

A child with hemophilia may have prolonged bleeding after an injury or even without an injury. This occurs because the child has low levels of a type of protein that helps the blood to form clots. These proteins are called clotting factors.

There are different types of hemophilia based on the clotting factor that is deficient. The most common type is hemophilia A. It is caused by low levels of clotting factor VIII (factor VIII deficiency). Other types include:

  • Hemophilia B. This type is caused by low levels of clotting factor IX (factor IX deficiency).
  • Hemophilia C. This type is caused by low levels of clotting factor XI (factor XI deficiency).

With hemophilia, bleeding can range from mild to severe depending on how much clotting factor the child is missing. Bleeding may occur through the skin, mouth, or nose. It may also occur inside the body, such as in the joints.

What are the causes?

This condition is usually caused by abnormal genes that are passed down through families (inherited). Males who carry this abnormal gene will have hemophilia. Females are more likely to carry the abnormal gene without having symptoms of hemophilia.

In rare cases, a person can develop hemophilia without inheriting the hemophilia gene. This can happen if a person develops proteins (antibodies) that attack clotting factors and keep them from working.

What increases the risk?

The following factors may make a child more likely to develop this condition:

  • Having a family history of the disease.
  • Being male. The disease is much more common in boys. Girls may be carriers of the disease, but they rarely develop symptoms.

What are the signs or symptoms?

The most common symptoms of this condition are unusual bleeding and bruising. This may occur after an injury, dental work, or a surgical procedure. It may also occur without any obvious cause. Bleeding problems may include:

  • Frequent bleeding from the mouth or nose.
  • Blood in urine or stool (feces).
  • Bleeding into joints or muscles. This may cause:
    • Swelling.
    • Stiffness.
    • Pain.
  • Bleeding into the brain. This may cause:
    • Headache.
    • Vomiting.
    • Sleepiness.
    • Weakness.
    • Vision changes.
    • Irritability.
    • Seizure.

How is this diagnosed?

This condition may be diagnosed with blood tests. A health care provider may suspect hemophilia in a child who bruises and bleeds easily. Blood tests will be done:

  • To measure bleeding time.
  • To measure clotting factors. This test will identify the type of hemophilia.

If there is a family history of hemophilia, diagnosis can be made before birth. After 12 weeks of pregnancy, a health care provider can test a sample of fluid from inside the womb to make a diagnosis.

How is this treated?

The main treatment for this condition is replacement of the clotting factor that is missing. Your child will be given the clotting factor through an IV. How often this is done depends on how severe the hemophilia is. Your child may be given clotting factor regularly to prevent bleeding, or it may be given only when bleeding occurs. You may also be taught to administer the clotting factor to your child at home. Other treatments may include:

  • A hormone (desmopressin) that may help to keep blood clots from breaking down. This is used only for mild types of hemophilia A. It stimulates the release of clotting factor VIII.
  • A type of medicine (antifibrinolytic medicine) that also helps to keep blood clots from breaking down. This medicine is taken by mouth. It may be given to people who have frequent bleeding from the nose or mouth. It may also be given before dental procedures.
  • Plasma. Plasma is the liquid part of the blood that helps move platelets and clotting factors throughout the body. This is given through an IV.

Follow these instructions at home:

Be sure to work with a team of health care providers who specialize in hemophilia. In the U.S., these teams are located at hemophilia treatment centers (HTCs). At an HTC, you can get help with home care, education about hemophilia, and support. To find an HTC near you, go to the website of the Centers for Disease Control and Prevention (CDC):

  • www.cdc.gov/ncbddd/hemophilia/HTC.html

Activity

  • Make sure your child avoids any activities that his or her health care provider says are not safe. Your child may need to avoid or limit activities or contact sports that could result in a fall or injury.
  • Have your child use elbow and knee padding and wear a helmet during athletic or recreational activities as told by your child’s health care provider.
  • Have your child get regular exercise through activities that are recommended by your child’s health care provider.

Safety

  • Use seat belts and safety belts to protect your child from injuries.
  • Avoid having furniture with sharp corners in the house.
  • Always store sharp objects where children cannot reach them.

General instructions

  • Give over-the-counter and prescription medicines only as told by your child’s health care provider. Avoid aspirin, ibuprofen, and other over-the-counter pain medicines because they can increase bleeding. Acetaminophen may be used for over-the-counter pain relief.
  • Tell all of your child’s health care providers, including your child’s dentist, that your child has hemophilia. Make sure you tell providers before your child has any procedure done, including dental cleanings.
  • Tell all child care providers that your child has hemophilia.
  • Have your child wear a medical ID bracelet that states that he or she has hemophilia.
  • Keep all follow-up visits as told by your child’s health care provider. This is important.

Contact a health care provider if:

  • Your child’s treatment is not preventing bruising or bleeding.

Get help right away if:

  • Your child has bleeding that will not stop.
  • Your child has any injury to the head.
  • Your child has any symptoms of bleeding in the brain.
  • Your child has severe joint pain and swelling.

Summary

  • Hemophilia is a bleeding disorder that prevents blood from clotting properly.
  • A child with hemophilia may have prolonged bleeding after an injury or even without an injury.
  • The main treatment for this condition is replacement of the clotting factor that is missing.
  • Tell all of your child’s health care providers, including your child’s dentist, that your child has hemophilia.
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