Bumps and scrapes are a normal part of childhood. For most kids, a tumble off a bike or a stray kick in a soccer game means a temporary bruise or a cut that heals with a scab. However, for kids with hemophilia, these everyday mishaps are cause for concern.
What is hemophilia?
Hemophilia is a genetic disorder that prevents blood from clotting properly. Clotting helps stop bleeding after a cut or injury. If clotting doesn't happen, a wound can bleed too much, either internally or externally.
Hemophilia mostly affects boys — about one in every 5,000-10,000. Girls who inherit the gene rarely get the condition, but as carriers of the gene, they can pass it to their children.
Signs and symptoms
Symptoms of hemophilia vary, depending on the amount of clotting factor a person has and the location of the bleeding. The most recognizable sign of hemophilia is excessive external bleeding after scrapes, paper cuts or losing teeth, for example.
Another sign that is harder to identify is internal bleeding. It shows up as bruising (especially bruising with swelling), redness or tenderness, especially in a muscle or joint. Kids with hemophilia can usually tell when internal bleeding is happening and often describe a "bubbly" feeling in an area like a joint.
Other signs of internal bleeding include red or tea-colored urine, called hematuria; black or bloody feces; or blood in vomit.
Diagnosing hemophilia
Few babies are diagnosed with hemophilia in the first six months of life because they're unlikely to have an injury that would lead to bleeding. As kids get older and become more active, a doctor may suspect hemophilia if a child bruises easily and bleeds too much when injured.
Diagnosing hemophilia is done with blood tests, including complete blood count (CBC), prothrombin time (PT), activated partial thromboplastin time (PTT), factor VIII level, and factor IX level tests. Doctors also will want to rule out other things that cause a lot of bleeding or bruising, such as liver disease, certain medicines and even child abuse.
Managing hemophilia
Hemophilia is a lifelong condition with no cure other than liver transplantation, a procedure that can sometimes cause health problems more serious than hemophilia itself. But hemophilia can be successfully managed by knowing when and how to treat a bleeding episode, and getting regular treatments that replace the missing clotting factor. Talk to your doctor about the best treatment methods for your child, and check back regularly – medical advances are made every day.
Preventing bleeding problems
Parents can help kids with hemophilia prevent problems by encouraging healthy behaviors, including:
- Regular exercise - Stronger muscles help decrease bleeding from injuries. Swimming is a great option because it exercises all the muscle groups without putting stress on the joints.
- Healthy weight - Extra weight strains the body and increases bleeding risks. If your child is overweight, speak to your doctor for advice on weight management.
- Dental care - Children should brush their teeth twice a day, floss regularly and drink fluoridated water to make it less likely gums will bleed or dental surgery will be needed.
To help prevent bleeding problems, doctors use caution when treating children with hemophilia. For example, when giving immunization shots that are normally given in the muscle, doctors instead inject the shots into a deep area under the skin called the subcutaneous tissue. It's important to remember that kids with hemophilia need all recommended vaccines.
Caring for kids with hemophilia
If your baby is diagnosed with hemophilia, put bumper pads in the crib, cushion furniture with sharp edges and put gates across stairs to prevent falls. As your baby begins to crawl and walk, special knee and elbow pads can offer protection against joint bleeds. Some parents sew a pocket in the seat of their child's pants and pad it with a piece of diaper. If your house has ceramic tile or hardwood floors, consider installing carpet or buying rugs to soften the floor surface. Depending on how energetic and adventurous your toddler is, you might want to have him or her wear a helmet to protect against head injuries.
The preschool years — when children are becoming more independent — can be one of the most challenging times for kids with hemophilia and their parents. For example, a preschooler may not tell mom and dad about an injury that resulted from doing something that's not allowed (riding a bike without a helmet, jumping on the furniture, running in the house, etc.). Most kids, though, will discover that prompt treatment is better than waiting until pain and swelling become severe.
As children get older, it's helpful to involve them as much as possible in their own care. This can include teaching them how to give their own factor injections and having them track their treatments. Kids with hemophilia can still participate in activities, though they might have to take on a different role. For example, hemophilia might prevent kids from participating in contact sports, but they can still be a part of the team as the scorekeeper or assistant manager. Swimming, hiking, golf and other low-impact sports are good options for kids with hemophilia.
Another option is to send them to a summer camp where they can meet other kids with hemophilia and work toward being able to give themselves clotting factor replacement therapy for a sense of control over the condition. Ask your doctor about finding a camp near you.
When to call the doctor
Certain bleeds need medical attention. If your child develops a swollen joint, this could be a sign of bleeding in the joint, so call the doctor right away. Also, if your child gets hurt or you suspect your child has bleeding or bruising anywhere on the body, call the doctor.
If your child has a central venous line and develops a fever, call the doctor right away. This could be a sign of a central line infection.
Go to the emergency room if your child has:
- an injury to the head, neck, belly or back
- bleeding that is not stopping
- severe belly pain or difficulty moving
- red or tea-colored urine
- bloody or black poop
If the bleed requires going to the emergency room, make sure your child is treated at a hospital that has experience treating hemophilia.