Consider the Whole Child
Your family's life has changed since your child's diagnosis with a bleeding disorder. While the stresses of caring for a chronically ill child may become the focus of your new way of life, it's critical to see your child as not just a disorder. It's equally important to make sure others do so as well.
Although you and your child will have additional responsibilities and challenges throughout each stage of his or her growth, remember, your child still has the same basic responsibilities as any other child of the same age. Be sure to address these traditional aspects of life.
You probably have many initial questions about the future of a child with a bleeding disorder.
Here are some common questions and concerns many people have when first hearing the diagnosis.
Q. How long do people with bleeding disorders live?
A. With modern treatment and proper management of the disorder, children born with hemophilia can expect to live long, full, and healthy lives.
Q. Can my child get hepatitis or HIV/AIDS from clotting factor treatments?
A. In the past, viruses like hepatitis A, B, and C, and HIV were passed from blood donors to people with hemophilia through factor treatments. Today, products are safer and the risk of contracting these viruses through clotting factor products has been dramatically reduced by several advances, including:
- Screening of all blood donors for hepatitis and HIV
- Purification and treatment of all human blood products to kill all known viruses
- Development of recombinant clotting factor products that have little or no human blood proteins
To be even safer, it is recommended that all children with hemophilia receive immunizations for hepatitis A and B. There are currently no immunizations available to guard against hepatitis C or HIV.
Q. Can my child exercise and play sports?
A. Yes! In fact, your child should get plenty of exercise. Physical activity, including exercise and the right type of sport, builds strong muscles that help protect the joints.
Some of the more commonly recommended activities for children with hemophilia include: swimming, bicycle riding, walking, jogging, tennis, golf, dancing, fishing, sailing, and bowling. Most experts recommend that children with hemophilia avoid contact sports because of the higher risk of head and abdominal injuries, such as football, hockey, boxing, and wrestling.
You and your child can experiment together to find the activities that work best for him or her.
- Talk to the Hemophilia Treatment Center staff, especially the physical therapist, about safe, age-appropriate activities for your child.
- Talking to other parents of children with hemophilia can also be helpful, especially if their children are older than yours and have asked many of the same questions.
- Involve the whole family in activities; everyone can use the exercise and family activities can be fun!
- Encourage participation in activities outside of sports as well. The arts offer a wide variety of social, yet nonstrenuous, activities.
Your child may want to try the activities that are popular with friends. If these activities cause painful bleeding episodes, you might need to work with your child to make some difficult decisions.
The Whole Child
To help your child lead as normal a life as possible despite the chronic illness, treat him or her like any other child. Of course, this must be balanced with any special considerations and needs he or she may have due to the illness.
Participation in various activities and clubs that involve peers is a great way to promote normalcy. Check your local National Hemophilia Foundation chapter for their programs.
Start to build your child's independence at an early age. Incorporate your child in daily activities to allow for the building of the sense of responsibility. Such activities may include getting the clotting factor out of the fridge, collecting infusion supplies, creating a sterile space for infusions, and/or helping you log the infusion.
— Brent, National Hemophilia Foundation's National Youth Leadership Initiative (NYLI) Member
