Hemophilia in Children

Hemophilia is a genetic disease, which means your child was born with it, and it’s been passed down from other family members. When your child has hemophilia, their blood doesn’t clot (stop bleeding) like it should when they get a cut, scrape or even what seems like a minor bruise.

This excessive bleeding can happen inside their body in muscles and joints — like their elbows, shoulders, ankles, hips and knees — and can cause permanent damage. There are also risks of bleeding in their brain, so getting the right diagnosis and expert treatment is important.

What to expect at your first visit

When you come to see us for the first time, we’ll talk with you about your child’s symptoms, overall health and family health history. Then, we’ll give your child a physical exam so we can check for signs of other conditions that could be causing their bleeding problems.

Next, we’ll do some blood tests to pinpoint their diagnosis. We know having their blood drawn can be scary for some children. Our child life specialists will be there to help your child cope with these tougher parts of the visit. They provide emotional support and help them understand what to expect.

Your child’s blood test results help us confirm a diagnosis. They also tell us what type of hemophilia they have and how severe it is. The types of hemophilia we diagnose and treat are:

• Hemophilia A, the most common type, also known as factor 8 blood clotting disorder
• Hemophilia B, formerly called Christmas disease
• Hemophilia C, the rarest form of hemophilia

Meet Our Hemophilia in Children Team

Choosing Cleveland Clinic Children’s to care for your child with hemophilia means they’ll have a team of skilled pediatric providers supporting them, and you, every step of the way. This team includes experts from different specialties who work together to make sure your child gets personalized care, both physically and emotionally. Their care team could include:

• Hematologists
• Pediatric pathologists
• Child life specialists
• Pediatric social workers
• Pediatric physical therapists

Your child’s providers will go over all their lab results with you, taking time to listen to your concerns and answer your questions. They’ll use all this information to design your child’s personalized treatment plan based on the type of hemophilia they have and how severe it is. And our child life specialists will be there to help your child cope with or manage any fears they may have about treatment. Your child’s care plan could include a mix of different treatments.

Factor replacement therapy

Our blood has many clotting factors (or proteins) that work together to help it clot. Having hemophilia means your child is missing (or is low in) one of these important factors.

We may recommend factor replacement therapy. Your child’s provider injects a clotting factor into a vein in your child’s arm through an IV (intravenous infusion). You can also give factor replacement therapy to your child yourself at home. The type of factor we use depends on what type of hemophilia your child has, how sever it is and how often your child needs an infusion.

Other drug therapies

Your child’s providers may recommend desmopressin (DDAVP) to treat mild hemophilia A. This medication is given through an IV and works to prevent or reduce bleeding by increasing clotting factors in your child’s blood.

Physical therapy

Our physical therapists are an important part of your child’s care team. They’ll work with you and your child to learn at-home exercises that can help your child build muscle strength, help their joints work better and prevent injury.

If your child has a joint bleed, our physical therapy team can help your child’s joint work better by lessening the stiffness and reducing pain. They can also teach your child how to use supports correctly.

Clinical trials for hemophilia

Treatments for hemophilia are evolving quickly. Researchers are currently conducting clinical trials for gene therapy, a promising new approach to hemophilia treatment. Ask your provider if participating in a clinical trial is right for your child.

Taking the Next Step

If your child has a bleeding disorder, a minor cut or injury can turn serious quickly. So, you might worry every time they run, jump and play. Cleveland Clinic Children's hemophilia experts are here to help you and your child learn to manage this condition with a personalized treatment plan. Our goal is to give your child the freedom to live an active, healthy life — no bubble wrap necessary.