hemophilia

comprehensive care for children with hemophilia

Dayton Children’s provides comprehensive, coordinated, multidisciplinary care, and case management services for over 600 patients with bleeding and clotting disorders. The core staff consists of a pediatric hematologist, coagulation resources nurses, social worker, physical therapist, genetic counselor, and data manager. Patients with the diagnosis of hemophilia or other bleeding and clotting disorders are managed using the comprehensive care model which comprises medical, psychological, and educational components.

what is hemophilia?

Hemophilia is a rare, inherited bleeding disorder, often diagnosed during the first year of life and most often affects males. Children with hemophilia lack “clotting factor,” a component in their blood that causes clotting. It can be mild, moderate or severe, depending on how much clotting factor is in the patient’s blood. When they are injured, they might bleed for a longer time than others would, or they might experience internal bleeding, which can cause joint pain and swelling. If left untreated, internal bleeding can cause permanent damage to the joints, organs and tissues, and it may be life threatening. However, with proper treatment, people with hemophilia can live a long life.

 A medical professional might notice excessive bleeding after a baby is circumcised, or after blood is drawn for routine testing. Frequent bruising also can be a symptom of hemophilia. Simple lab tests can confirm whether a child has hemophilia.

The primary treatment for hemophilia is to replace the missing clotting factor through infusions. The frequency of infusions depends on the severity of the patient’s condition. At first, patients receive these infusions in the outpatient clinic. Eventually, parents learn how to do infusions at home. As patients with hemophilia get older, our team trains them to administer their own medication and become self-sufficient at managing their condition. At Dayton Children's, patients are also able to participate in clinical trials.

The National Hemophilia Foundation estimates that there are about 20,000 people in the United States with hemophilia, and more than 400,000 worldwide.

treatment

Your first visit to the hemophilia clinic includes testing to confirm the diagnosis and determine the severity of the child’s condition. Our team spends as long as necessary with families to help them understand what hemophilia is, how to administer clotting factor, and how to help their child have the highest quality of life possible. We are always available by phone for questions or to discuss concerns. During office hours, you can call the clinic; after hours, call the hospital switchboard and ask for the pediatric hematologist/oncologist on call.

The primary treatment for hemophilia is to replace the missing clotting factor through infusions. The frequency of infusions depends on the severity of the patient’s condition. At first, patients receive these infusions in the outpatient clinic. Eventually, parents learn how to do infusions at home. As patients with hemophilia get older, our team trains them to administer their own medication and become self-sufficient at managing their condition.

We encourage hemophilia patients to come to the center for an annual comprehensive visit that includes a thorough physical and appointments with a social worker, physical therapist and genetics counselor.

genetic testing

Dayton Children’s offers genetic testing and counseling for families who want to know more about the genetic cause of their child’s hemophilia. We encourage female siblings to undergo genetic testing before they become sexually active, in order to determine whether they are at risk for passing on a genetic trait to their own children.

family support

The hemophilia clinic team offers families support and education to help them thrive. Our coagulation nurse provides families and patients with extensive training to help them learn how to infuse at home and educate and train school nurses and teachers about hemophilia.

We partner with the Southwestern Ohio Hemophilia Foundation to sponsor weekend retreats and other programs for families.

Also check out our family support resource directory for additional support.