Diagnosing Hemophilia

When Your Child is Diagnosed

Expect emotional, financial, social and other strains as you adjust to the situation of having a child with hemophilia. Learn all you can about the disorder and get the support you need.

Talk with doctors and other health care providers about treatment, prevention of bleeding, and what to do in emergencies.
Take advantage of the care teams at the hemophilia treatment centers (HTCs) for education and support as well as treatment. The social worker on the team can help with emotional issues, financial and transportation problems, and other concerns.
Seek the many resources available through the web, books, and other materials, including those provided by national and local hemophilia organizations.
Look into support groups that offer a variety of activities for children with hemophilia and for family members. Some groups offer summer camps for children with hemophilia. Ask your doctor, nurse coordinator, or social worker about these groups and camps, or contact the Hemophilia Federation of America or your local chapter of the National Hemophilia Foundation.

Challenges will occur as your child grows and becomes more active. In addition to treatment and regular health and dental care, your child needs information about hemophilia that’s at his or her level. Children with hemophilia also need to be reassured that the condition isn’t their fault and given support for having a chronic health problem.

Young children with hemophilia need extra protection from things in the home and elsewhere that could cause injuries and lead to bleeding:

Protect toddlers with kneepads, elbow pads and protective helmets. All children should wear safety helmets when riding tricycles or bicycles.
Be sure to use the safety belts and straps in highchairs, car seats, and strollers to protect the child from falls.
Remove furniture with sharp corners or pad them while the child is a toddler.
Keep out of reach or locked away small and sharp objects and other items that could cause bleeding or harm.
Check play equipment and outdoor play areas for possible hazards.

You also need to learn how to examine your child for and recognize signs of bleeding as well as prepare for bleeding episodes when they do occur. Keep a cold pack in the freezer ready to use as directed or to take along with you to treat bumps and bruises. Popsicles work fine when there is minor bleeding in the mouth. You also might want to keep a bag ready to go with items you will need if you must take your child to the emergency room or elsewhere.

Be sure that anyone who is responsible for your child knows that he or she has hemophilia. Talk with your child’s babysitters, daycare providers, teachers, other school staff and coaches or leaders of afterschool activities about when to contact you or to call 911 for emergency care.

Consider having your child wear a medical ID bracelet or necklace. If your child is injured, the ID will alert anyone caring for your child about the condition.