When your child has hemophilia, it’s important to work closely with his school to educate key staff members about his health condition and to put an emergency plan in place with the school nurse—if there is one.
Doing so is even more essential now because fewer than half of U.S. public schools have a full-time registered nurse on staff, according to the National Association of School Nurses (NASN). Seventy-five percent of schools employ either a part-time or full-time registered nurse.
“Parents should take the lead,” says Kim Schafer, RN, BSN, the pediatric hemophilia nurse coordinator at the Hemophilia Treatment Center at University of California-Davis. “They should really make contact with the school early to begin education about the bleeding disorder. They should let the school know that they’re open to communication through e-mails and phone calls.”
A school plan should include phone numbers for parents and the local hemophilia treatment center (HTC), as well as specific directions on what to do in case of an emergency, Schafer says. It should also explain how to recognize mild, moderate and severe bleeds, and direct school staff to contact the HTC—and a parent—if the child is already bleeding.
Each school year, parents should request the proper medication forms from the school and make sure the documents are signed by the treating physician, Schafer recommends. That way, she says, the school can keep the medications on site, either in a locked box or a refrigerator.
It’s also a good idea to request a meeting with the school nurse and office staff, teachers and playground workers before the school year begins? Anyone who might handle small injuries and might have questions should be included, Schafer says.
Schafer also suggests inviting the HTC’s nurse and social worker to attend the meeting. Talking things through may help ease the nerves of the school administration and staff, she says. “A lot of times, I make visits out to the school, especially for the younger kids just starting in the school system, to get everything established,” Schafer says.
Also encourage your child to participate in the meeting. This helps the school staff recognize who he is and remember what his needs are, says Schafer. And it’s wise to start educating a child early to report bleeds to the teacher or other school staff right away.
“Parents can play a huge role in teaching their children to communicate when they are hurting,” says Schafer. It’s vital that the child either self-infuses or has an adult do it as soon as possible, she says.
Jeanette Cesta, mother of three school-age children who have moderate to severe von Willebrand disease, often includes them in meetings with the school nurse. “Have your kids come and explain as much as they can,” she advises. “When the kids are in school, you’re not going to be there.”
Cesta suggests scheduling a time to meet before the school year starts. “I always try to go in at the end of the [previous] school year and find out if they’re going to be available over the summer to talk to,” she says.
Sometimes, though, even the best-laid plans can fall apart. Cesta recalls one time when her daughter, then 10, got hit with a basketball in gym class, and the substitute teacher refused to let her go to the nurse’s office. Afraid to push further, her daughter waited a half hour until class ended to go to the nurse’s office. Cesta followed up with the school after the incident. Together they came up with a plan to make students’ medical records available to substitute teachers if the parents agreed in writing.
If your child’s school doesn’t employ a registered nurse, you need to have a different plan. “Parents should always ask who’s in the health room,” advises NASN executive director Donna Mazyck, MS, RN, who has a National School Nurse Certification. “You want to know for sure because it may be an unlicensed assistant—for example, a health aide—who’s in that school every day.”
Mazyck adds that if a school doesn’t employ a registered nurse, it is still required to provide healthcare services for students who qualify under the Individuals with Disabilities Education Act, or Section 504 of the federal Rehabilitation Act. If health services are required, the school must work with a registered nurse to develop an individualized healthcare plan.
Still, sometimes instructions need to be clarified or reinforced. Schafer once had a student who went to the school office complaining of a muscle bleed. When the staff couldn’t reach the child’s mother, they panicked and called an ambulance. The child made an unnecessary visit to the emergency room.
When something goes awry, Schafer says, it’s best to be direct without pointing fingers. Parents can say, “Things didn’t quite work out as planned. Let’s go back, look at the care plan and see if there is something different we need to do.’”
National Association of School Nurses
National Hemophilia Foundation’s brochure for school personnel, “The Child With a Bleeding Disorder: Caring for Children With Hemophilia”
Steps for Living: Federal Legislation