Hemophilia in Children

Medically reviewed by Drugs.com. Last updated on Jul 7, 2024.

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What is hemophilia?

Hemophilia is a disorder that causes your child to bleed more or longer than normal. Clotting factors such as platelets and fibrinogen help form clots to stop bleeding. The clotting factors in your child's blood may not work correctly, or his or her body may not make enough.

What are the types and levels of hemophilia?

The 2 types of inherited hemophilia are type A and type B. Hemophilia A is much more common than hemophilia B. Hemophilia A means the level of clotting factor VIII (eight) is lower than normal. Hemophilia B means the level of clotting factor IX (nine) is lower than normal. Hemophilia can be mild, moderate, or severe. This is based on the amount of clotting factor or the kind of bleeding episodes your child has. A bleeding episode is bleeding that lasts longer than several minutes. Bleeding episodes can occur suddenly with or without injury.

• Mild: Your child has some clotting factor activity in his or her blood. He or she may only have severe bleeding after a major surgery or severe injury. Your child's hemophilia may not be discovered until he or she has a tooth pulled, surgery, or a bad injury.
• Moderate: Your child has a low level of clotting factor activity in his or her blood. Your child likely will have heavy bleeding when he or she has an injury or surgery. He or she may also have episodes of bleeding that occur suddenly.
• Severe: Your child has very little clotting factor activity in his or her blood. He or she will have heavy bleeding following an injury or surgery. He or she may also have frequent sudden bleeding, usually into his or her joints and muscles.

What are the signs and symptoms of hemophilia?

Bleeding can occur anywhere in your child's body. It may happen in places you can see, such as the nose or mouth. It can also happen inside his or her body and may cause pain, swelling, and bruising. Your child may have any of the following:

• Bruising easily or often
• Bleeding from the nose or gums
• Pain and swelling in joints or muscles
• Bleeding that lasts a long time
• Bowel movements that are black
• Urine that is pink or red

How is hemophilia diagnosed?

Your child's healthcare provider will examine your child. Tell the provider when and how bleeding occurs. Tell the provider if your child has a family history of hemophilia or other bleeding problems. Hemophilia is usually inherited. This means a gene is passed from parent to child. The risk for hemophilia is higher if your child is male. Your female child may have the gene but not have hemophilia.

• Blood tests are used to check the type and amount of clotting factor your child has. Your child's clotting factors and platelets will be tested for how well they work. Your child will need to have blood tests more than 1 time. Clotting factors change over time.
• Genetic counseling may be recommended if you have hemophilia in your family and plan to have a baby. This counseling will help you find out if you carry the gene for hemophilia and may pass it to your baby. If you are already pregnant, hemophilia can be diagnosed before your baby is born. During pregnancy, healthcare providers may do tests to check for problems while your baby is still in the womb. A sample from your baby's tissues may be collected and sent to a lab for tests. After your baby is born, a sample of cord blood can be tested to check your baby's clotting ability and hemophilia status.

How is hemophilia treated?

Hemophilia cannot be cured. Treatment is based on the type your child has and on his or her symptoms:

• Replacement therapy is used to give blood cells called factor concentrates to replace the missing clotting factor. For severe hemophilia, this treatment may be scheduled 2 or more times each week. Your child may also need this treatment for sudden bleeding. Blood cells may be given through an IV, central venous catheter, or port.
• Medicines may be given to keep blood clots from breaking down, stop bleeding, or increase blood clotting factors. Your child may also need medicine to decrease swelling.
• Surgery such as arthroplasty may be used to repair damage caused by bleeding into your child's joints.

What can I do to help my child manage hemophilia?

• Encourage your child to be physically active, as directed. Physical activity helps keep your child's muscles flexible and prevents muscle and joint damage. Always check with healthcare providers before your child starts any new physical activity. Physical or occupational therapists may need to help your child learn to be active safely or do daily activities more easily. Your child can play sports, but severe hemophilia may limit the type of sports he or she can play. Do not let your child play contact sports, such as football and basketball. Contact sports increase your child's risk for bruising and bleeding. Talk to your child's healthcare provider about the best sports and activities for your child.
• Keep your child's teeth and gums healthy. Ask your child's provider if certain therapies or medicines should be given to your child when his or her teeth get cleaned. The amount of his or her clotting factor may also need to be increased before he or she has dental procedures. Talk with your child's provider before your child has any dental work.
• Ask about vaccines your child may need. Examples include the hepatitis A and B, flu, and COVID-19 vaccines. Your child's provider can tell you if your child also needs other vaccines. The provider can help you schedule all needed vaccine doses.
• Help protect your child from injuries that can cause bleeding. Young children who are learning to walk can fall and hit hard items. You may need to pad hard items in your home during this period. Protect your child when he or she is riding in a car by always having him or her in a car seat, or use a seatbelt. Your child should always wear a helmet if he or she rides a bicycle or does other activities that may cause a head injury. Your child may also need to wear knee and elbow pads to protect joints from injury during activities.
• Learn more about hemophilia. The more you know about hemophilia, the better you will be able to help your child. Ask how you can learn more about the type of hemophilia your child has.
• Have your child carry medical alert identification. Your child can wear medical alert jewelry or carry a card that says he or she has hemophilia. Ask your provider where to get these items.

What can I do to manage bleeding episodes?

Call your healthcare provider right away if you are bleeding. Use the following first aid steps as the first treatment for any bleeding episode. You and anyone else who cares for your child must know how to do first aid if your child starts bleeding. If these measures do not stop the bleeding, other treatments will be needed. The following may reduce bleeding and decrease pain.

• Prepare for bleeding episodes. Have the supplies ready that you may need to treat a bleeding episode. Have your child's provider help you prepare a written emergency plan for how to handle your child's bleeding episodes. The plan should cover care for your child at home and school, and what to do if he or she has to go to the hospital.
• Help your child rest. Have your child sit or lie quietly until the bleeding episode ends.
• Use pressure to help stop or slow skin bleeding. Place a clean cloth or towel over the area. Then apply pressure with your hands. Ask your child's provider how to clean open skin wounds.
• Manage bleeding from your child's nose or mouth. Have your child breathe through his or her mouth and lean forward. This will help stop blood from going down the back of your child's throat. Tell your child not to swallow the blood.
• Check for blood in your young child's urine. If you see blood in your child's urine or he or she has pelvic pain, have your child rest in bed for 2 days. Offer more liquids, such as water. Ask your child's provider how much liquid your child should drink each day.
• Manage joint bleeding. Apply ice to a painful or swollen joint. Use an ice pack, or put crushed ice in a plastic bag. Cover the bag with a towel before you apply it to your child's joint. If the joint is on an arm or leg, prop it on pillows or blankets to keep it elevated comfortably. Have your child wait until the pain is gone before he or she uses the joint again. Call your child's provider if the pain is not gone within 3 days.

Call your local emergency number (911 in the US) if:

• Your child has a head injury or a seizure.
• Your child has bleeding from an injury to his or her throat, neck, or eyes.
• Your child has a bleeding episode that cannot be controlled.
• Your child has chest pain or trouble breathing.

When should I seek immediate care?

• Your child has many large bruises on his or her body, or swelling in his or her joints.
• Your child has joint pain that lasts longer than 3 days.
• Your child has severe hemophilia and has pain in the lower part of his or her stomach, groin, or lower back.
• Your child is vomiting blood or has blood in his or her bowel movement.

When should I call my child's doctor or hematologist?

• Your child feels very tired and weak.
• Your child has chills or a fever.
• Your child has nausea, is vomiting, or has a severe headache.
• You have questions or concerns about your child's condition or care.

Where can I find support and more information?

• National Heart, Lung and Blood Institute
  Health Information Center
  P.O. Box 30105
  Bethesda , MD 20824-0105
  Phone: 1- 301 - 592-8573
  Web Address: http://www.nhlbi.nih.gov/health/infoctr/index.htm
  

• CDC National Center on Birth Defects & Developmental Disabilities, Blood Disorders
  1600 Clifton Rd
  Atlanta , GA 30333
  Phone: 1- 800 - 232-4636
  Web Address: http://www.cdc.gov/ncbddd/hbd/default.htm
  

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