At the beginning of every school year, Barb Dittrich, 49, sits down with the staff at her son’s school to go down the list of PE offerings. Flag football? No. Too many kids still try to tackle.
Hockey? Nope. Too many sticks flying.
Soccer? That’s fine. But he has to wear shin guards.
It’s a balance that families of children with bleeding disorders have to strike when considering how—or if—their children can participate in physical education classes at school.
On one hand, Barb doesn’t want to alienate her son, Charlie, 13, from his peers, especially since he’s the only student in his school with a bleeding disorder, severe hemophilia A. Nor does she want him to think of his bleeding disorder as a hindrance to being active.
On the other hand, for Charlie there are the risks of injuries that could lead to major bleeds. During an incident in sixth grade, a gym teacher had the students do an exercise that involved jumping on and off of a stage. “He caught the stage right on his chin,” recalls Barb, executive director of Snappin’ Ministries, a support network for parents of children with special needs, headquartered in Oconomowoc, Wisconsin.
The right to gym class
Despite the risks, physical education is an important part of growth and development for all children. In a January 2013 letter, Seth M. Galanter, the acting assistant secretary of the US Department of Education’s Office for Civil Rights, expressed support for letting students with disabilities and special needs participate in physical activities like gym class.
The letter cites a June 2010 report from the nonpartisan Government Accountability Office that found widespread discrimination against students with disabilities, even though Section 504 of the Rehabilitation Act of 1973 states that all students must have an equal opportunity to participate in sports activities that receive federal funding.
A 504 plan can help lay out the terms of a child’s participation at school, says Doreen Rousseau-Purdy, a school psychologist from Mexico, New York. It is drafted by parents and school staff to outline any accommodations a child may need during the school day. It can include gym class considerations.
“If your child has bleeds from certain activities, there should be a discussion with the school about other roles the child can play,” Rousseau-Purdy says. Those could include serving as equipment manager or referee. “Put that right in the 504 plan.”
While 504 plans address discrimination, they also facilitate the child’s well-being. Children with bleeding disorders can and do excel in physical activities. Rousseau-Purdy’s youngest son, Zachary, 18, was named MVP of his high school basketball team earlier this year. He has severe hemophilia A.
“If I would have told him he could no longer play, he would have wondered why he exists,” Rousseau-Purdy jokes. “Kids have to understand the risks. But you also have to talk about what their quality of life will be like if they can’t do things they love.”
Getting the benefits without the risks
Because of the benefits of physical education, medical researchers have been looking into which activities are safe for young people with bleeding disorders. One study from Australia, published in the October 10, 2012, issue of the Journal of American Medical Association, looked at how much the risk of bleeding increased with vigorous exercise. Study author Dr. Carolyn Broderick and her team of researchers rounded up 104 boys with moderate to severe hemophilia ages 4 through 18, with an average age of 9.5. The researchers monitored the boys’ bleeds and physical activity through telephone interviews for one year.
Eighty-eight participants had bleeding episodes, usually in the knees, ankles and elbows and most frequently before and after school. But researchers found that some sports were associated with a higher risk of bleeds, depending on the activity’s intensity and how often the child played.
Activities were categorized by their likelihood of a severe collision, broadly based on NHF’s publication Playing It Safe: Bleeding Disorders, Sports and Exercise. Swimming, for example, was a category one activity. Basketball was considered a category two activity, while sports where collision is inevitable, like wrestling, were ranked in category three. “For a child who bleeds five times annually and is exposed on average to category two activities twice weekly, and to category three activities once weekly, exposure to these activities was associated with only one of the five annual bleeds,” the study authors wrote.
Another smaller study found no difference in the risk of bleeding between high-impact activities, like basketball and baseball, and low-impact activities, like cycling and swimming. The study gathered clinical data and information via telephone interviews on 37 young people between ages 6 and 21 with severe hemophilia A or B who were on factor prophylaxis.
“Surprisingly, we found that kids with severe hemophilia could take a lot more in the way of impact sports than is often attributed to them,” said Marilyn Manco-Johnson, MD, of the Mountain States Regional Hemophilia and Thrombosis Center at the University of Colorado, in a previous issue of HemAware. The study was published in the November 2009 issue of the journal Pediatrics.
Proceed with caution
The mentality surrounding letting kids with bleeding disorders participate in physical education and sports has shifted away from fearful exclusion toward enthusiastic, but cautious, inclusion, says Mavis Harrop, MSSW, LCSW.
During Harrop’s 24 years at the Vanderbilt Hemophilia Treatment Center in Nashville, she has seen more parents of affected children embrace gym class participation, but now it’s happening at a younger age. “By age 7, the kids are involved in something, some even earlier,” she says.
The key is guiding parents and school staff toward the right activities for the child, Harrop says. “My role is to say, ‘What are your thoughts, and why do you think your child should or shouldn’t play?’”
The basis for the decision should also include the child’s age. By middle school, students are more competitive, so gym activities that were OK in elementary school may be more dangerous in later years, says Harrop.
That means it’s important to find appropriate ways for children with bleeding disorders to participate in activities, based on their individual symptoms. “If they want to play baseball, we can talk to the school and say, ‘He can play outfield, but he can’t play pitcher because he could get hit harder with the ball,’” Harrop says.
Kids with bleeding disorders can and should engage in routine physical activity, but with appropriate accommodations. “The important thing is try to help parents understand how the exercise is good for children, how it can strengthen muscles around the joint so they are less likely to have a bleed,” Harrop says.
Barb is pleased that Charlie’s school includes him in gym class. “They don’t make him sit out and write a paper about football,” she says. “Instead, they’ll make him a referee.”
Charlie is also becoming independent enough to voice his own concerns with gym class activities. The stage incident taught him to speak up when he’s uncomfortable doing something, says Barb.
“That’s what we ultimately want, for him to make the best decisions for himself,” she says.
Maintaining a Healthy Body, Steps for Living