1. Recognize Types of Bruising and Bleeding
Hemophilia is a disease in which the body does not manufacture enough of the component within blood that enables clotting. Since hemophilia is a genetic disease, its presence is obvious from early on. Sharp baby teeth may cut into gums and cause bleeding in the mouth. Babies also may develop a rash made up of tiny dots called petechiae. Petechiae develops from broken capillaries beneath the skin. To assess whether a rash is petechiae, press lightly on the affected skin. Although the skin around it may blanch, petechiae does not. You may also see blood in the baby's urine.
2. Monitor the Environment
Children with hemophilia often show excessive bruising around the time they are learning to walk. Bumps and bruises obtained during normal activities become more severe that those of a non-hemophiliac. It is important for parents to know which precautions to take around the house to minimize bleeds. Toddlers may require padded clothing and extra-special handling. Eventually, most hemophiliac children become more adept at avoiding situations wherein bleeding might occur, but before you can educate a child, you need to watch him closely.
3. Know Symptoms of Internal Bleeds
Children with hemophilia are more prone to bruising and excessive bleeding on the surface, but as they get older, internal bleeds become more common. Parents caring for hemophiliac children must be aware of signs that indicate a hemophiliac is experiencing internal bleeding. It is common for excessive bleeding to occur around the joints, soft tissues and muscles. At first, a joint may just seem stiff. As time progresses, it becomes visibly red, swollen and warm. Eventually, excruciating pain sets in and the joint locks up in a slightly flexed position. Joints that have bled before are at a higher risk of bleeding again.
4. Note Symptoms of Bleeds Into Crucial Areas
The most dangerous bleeds are bleeds into the brain, as these have the potential to adversely affect the entire body. Symptoms of internal bleeding include headache, vomiting, sleepiness or a change in normal behavior, sudden weakness or clumsiness with an arm or leg, stiffness of the neck or pain with neck movement, crossed eyes, poor balance and convulsions or seizures. Bleeds in the neck and throat can possibly cut off the airway.
5. Treatments are Improving
For years, the only successful way to treat hemophilia was by using donated blood to infuse the hemophiliac with the factors that allow for clotting. This carried some risk of infection, however. Technology has allowed for the gene that produces the factors in blood to be cloned and from this, doctors can synthesize human blood factors VIII and IX. While hemophilia will never be completely harmless, today it is more manageable.
