Hemophilia is a lifelong disease that prevents blood from clotting normally. This means that when a child with hemophilia suffers an internal or external injury, excessive bleeding may occur. Those with milder cases may only experience excessive bleeding once in a while, while more severe cases are at an increased risk for more frequent and serious bleeding problems. Generally speaking, boys are most affected by hemophilia, although girls can carry the gene that causes this disease.

The multidisciplinary hemophilia team at the Children’s Blood and Cancer Center hemophilia clinic is dedicated to providing the best quality care available to help promote a healthy, normal life for your child or teen.

Wellness and Prevention

Hemophilia is an inherited disease, so is not preventable. However, there are a number of early signs that you can look for in infants and young children to help detect bleeding problems early on and seek treatment:

  • Excessive external bleeding, which is the most obvious and easiest to notice symptom
  • Excessive internal bleeding, which may present as bruising, swelling or tenderness
  • Blood in urine, stool or vomit
  • Seizures, headaches or vomiting following a head injury

Diagnosis

If you suspect that your child may have hemophilia, contact a specialist as soon as possible for an accurate diagnosis, which may involve a series of blood tests:

  • Complete blood count (CBC) test to measure the number of red blood cells, white blood cells and platelets in your child’s bloodstream.
  • Prothrombin time (PT) test to measure the time that it takes for a clot to form in a sample of your child’s blood. A PT tests measures five clotting factors: I, II, V, VII and X. If any clotting factors are missing in a blood sample, clotting can be delayed.
  • Activated partial thromboplastin time (PTT) test also measures how long it takes for blood to clot, but this test looks at different clotting factors than a PT test.

Your child’s doctor may also perform a physical exam or other tests to rule out the possibility of other conditions that have similar symptoms, such as liver disease or other blood diseases.

Treatments

There is no cure for hemophilia other than a liver transplant, which is not always the best option, as it can lead to further health complications. But most children and teens with this condition are able to lead healthy lives with a normal lifespan by taking a few steps to manage excessive bleeding.

Factor Replacement Therapy

By replacing the missing clotting factors in your child’s blood, factor replacement therapy can help to manage hemophilia. This treatment can be administered either during a bleeding episode to help the blood clot more quickly, or as a regular treatment session to promote healthy blood.

Factor replacement therapy involves the use of an IV in order to deliver the clotting factor to your child’s bloodstream. Sometimes, children may develop antibodies that prevent these new clotting factors from working. In this case, your child’s doctor might suggest a medication that blocks these antibodies.

Managing External and Internal Bleeding

Knowing how to effectively treat external and internal wounds is another key aspect of living with hemophilia. In some situations, especially if your child has only mild symptoms, external bleeding can be treated with normal first aid strategies, including applying direct pressure to the cut and cleaning and bandaging it. If bleeding still doesn’t stop, factor replacement therapy may be required.

Internal bleeding can be more difficult to notice, so it’s important to discuss what signs to look for with your doctor. In the event of an internal bleed, factor replacement therapy is the best treatment method. In addition, ice can be applied to the affected area to help reduce inflammation and encourage clotting.

Aftercare

Because hemophilia is a lifelong condition, the aftercare strategies following diagnosis are centered on promoting education and self-help skills for both children and their parents. A pediatric hematologist from our hemophilia clinic can provide regular wellness checkups to ensure your child’s continued health, and social work specialists offer access to support networks and other community resources that can make living with hemophilia easier for you and your child.