A simple cut or scrape that causes your child to bleed is typically not cause for concern since the bleeding will stop fairly quickly. For a child with hemophilia, however, these injuries may be far more serious because the blood does not clot normally.
If your child has hemophilia, pediatric hematologists and genetic specialists at Rush University Children’s Hospital can work with you and your child to develop an effective treatment plan and get your child safely on the road to health.
Remarkable Care for Kids
- Comprehensive hemophilia treatment center: The Rush Hemophilia and Thrombophilia Center is the largest center of its kind in Illinois. A team of specialists at the center offers personalized solutions to help your family address your child’s bleeding disorder — so you can feel confident that your child can return to play and get back to being a kid.
- Expertise in hemophilia treatment: Pediatric hemophilia specialists at Rush University Children’s Hospital are experts in managing factor replacement therapy — both preventive therapy and on demand therapy — for children. Clinician-researchers at Rush are also involved in clinical trials and research studies that may open the door to new effective treatments for improving hemophilia in children.
- Genetic experts that help you understand your options: At Rush University Children’s Hospital, we understand that genetic conditions like hemophilia come with many questions. A team of genetic specialists at Rush takes care to combine science with compassion in providing you with the support and answers you need to help your child thrive.
- Care close to home: Pediatric hemophilia specialists from Rush University Children’s Hospital are available to see patients at our Rush campus in Chicago, Rush Copley Medical Center in Aurora, and satellite locations in Joliet and Hoffman Estates.
What is hemophilia in children?
Hemophilia is a rare bleeding disorder, which results in bleeding taking longer than normal to stop. Children born with hemophilia have too little or no clotting factor, a protein required for normal blood clotting. The risk for bleeding inside joints such as the ankles, elbows and knees is also greater. Internal bleeding can also cause life-threatening organ and tissue damage.
Hemophilia is typically inherited and passed from you to your child through genes. While very rare, hemophilia can also be acquired when your child’s body forms proteins that attack clotting factors in the bloodstream. The proteins, or antibodies, can stop clotting factors from working.
Children can have these two types of hemophilia:
- Hemophilia A (Classic): Having low levels or missing clotting factor VIII (8)
- Hemophilia B (Christmas disease): Having low levels or missing clotting factor IX (9)
Symptoms of hemophilia in children
These are the most common symptoms of hemophilia in children:
Excessive bleeding and easy bruising
How much bleeding occurs is linked to the severity of the hemophilia. A child with mild hemophilia may not show signs unless an accident, dental procedure or surgery causes excessive bleeding. It’s helpful to be able to recognize the signs of both internal and external bleeding.
Signs of external bleeding may include the following:
- Bleeding in the mouth due to a cut, bite or from cutting or losing a tooth
- Bleeding from a cut that restarts after stopping for a short time
- Heavy bleeding caused by a minor cut
- Nosebleeds with no obvious cause
Signs of internal bleeding may include the following:
- Blood in urine from bleeding in the bladder or kidneys
- Blood in stool from bleeding in the intestines or stomach
- Large bruises from bleeding into large muscles of the body
Bleeding in joints
Bleeding in joints such as the ankles, elbows and knees can occur without a noticeable injury. If it’s not treated quickly, joint bleeding can cause joint damage. Here is how bleeding in your child’s joints can progress:
- Bleeding causes a feeling of tightness in the joint with no visible signs of bleeding or real pain
- Joint becomes swollen, hot to the touch and causes pain when bending
- Swelling increases as bleeding continues
- Movement of joint is temporarily lost with severe pain
Bleeding in the brain
If children with hemophilia get a simple bump on the head or a more serious injury, internal brain bleeding can happen. Symptoms of bleeding in the brain include the following:
- Convulsions or seizures
- Constant vomiting
- Double vision
- Neck pain or stiffness or painful, long-lasting headaches
- Sleepiness or behavior changes
- Sudden weakness or clumsiness of arms or legs or trouble walking
Care for children with hemophilia at Rush
Your child’s pediatrician may ask you about your personal and family medical histories if your child has a bleeding problem. Your child’s pediatrician, a pediatric hematologist or a genetic specialist will do an exam and a blood test to determine if your child has hemophilia.
Blood tests are used to determine the following:
- How long your child’s blood takes to clot
- Whether your child’s blood has low levels of any clotting factors
- Whether your child’s blood is missing a clotting factor
Test results will show whether your child has hemophilia, what type and how severe it is. Severity levels are classified in the following ways:
- Mild hemophilia: 5 to 40 percent of normal clotting factor
- Moderate hemophilia: 1 to 5 percent of normal clotting factor
- Severe hemophilia: Less than 1 percent of normal clotting factor
Treatment: replacement therapy
The most common treatment for hemophilia is replacement therapy. Your child receives intravenous infusions of the missing or low clotting factors. For hemophilia A, the infusions are concentrates of clotting factor VIII. For hemophilia B, the concentrates are clotting factor IX.
Replacement therapy can take place in two of the following ways:
- Preventive or prophylactic therapy: Receiving treatment on a regular basis to prevent bleeding
- On demand therapy: Receiving treatment on an as-needed basis in response to bleeding events
Replacement therapy at home
Both preventive and on demand therapy can be done at home. Pediatric hematologists and their team at Rush University Children’s Hospital can help you learn the steps and safety procedures for home treatment. They can also help you determine if an implanted vein access device would make treatment easier for your child.
Benefits of home replacement therapy include the following:
- Faster treatment when bleeding occurs, which lowers risk of complications
- Fewer emergency room and doctor visits
- Less cost than treatment in medical care setting
- Helping your child accept and cope with treatment
Treatment: other options
In addition to replacement therapy, other types of treatment for hemophilia in children include the following:
- Antifibrinolytic medication: A pill or liquid that is usually added to replacement therapy to prevent blood clots from breaking down, and often used before dental work or to treat a bloody nose or mouth
- Desmopressin (or DDAVP): Nasal spray or injection of a manmade hormone that treats children with mild hemophilia A, which stimulates release of stored factor VIII; usually given before minor procedures, dental work or playing certain sports to prevent or reduce bleeding
- Specific bleeding site treatment: Pain and swelling in a joint may be treated with factor replacement therapy, pain medications, and physical therapy
Pediatric hematologists at Rush University Children’s Hospital will work with you and your child to determine which treatment is best for your child, taking into consideration the bleeding symptoms, activities your child participates in, dental or medical procedures our child is having, and the severity of the hemophilia.