As your child is growing up, you know the big milestones like the first day of school, learning to ride a bike and, later on, getting a driver license and graduating from high school.
But if your child has hemophilia, you are probably wondering about another future accomplishment: When will my child learn to self-infuse?
Having a bleeding disorder, such as hemophilia or the lesser-known (but more common) von Willebrand Disease, means that someone’s blood does not clot the way it should. When injured, even invisibly so in the joints, the body doesn’t stop bleeding as it would for someone who has normal amounts of active clotting factor.
To stay healthy, people who have bleeding disorders need to infuse clotting factor, or coagulant. Depending on the severity of the disease they have, some will have to infuse regularly and others, less often, when they have a bleed or they need an invasive medical or dental procedure. If your child has a bleeding disorder, the hematologist will work with you and your child to determine the schedule for infusions.
Early on, it’s Mom or Dad’s job
Typically, a parent takes responsibility for a young child’s infusions. Moms and dads receive training and learn the many steps involved in a successful infusion. There’s a lot to learn. Parents must collect the factor from the pharmacy, store it properly, mix it correctly, follow rules about proper hygiene, learn to access a vein, infuse the medicine at the right pace and then dispose of the needles in a safe way. Parents must keep track of the infusion schedule and be prepared for an emergency, when additional infusions could be required.
Then there’s the emotional side. Parents have the important job of helping kids remain calm and learn to accept infusions as just a normal part of life, like brushing their teeth. Parents have their own understandable emotions, too, about coping with a child’s bleeding disorder.
Turning over this responsibility to their kids can be difficult for parents. And there’s no one “right” age when a child should take over this important task. But kids often learn this skill between the ages of 8 and 14. If you have questions about your own child’s readiness, ask your healthcare team at your hemophilia treatment center.
Lori Kunkel, who raised three boys who have hemophilia, said her kids started early.
“They were always part of the process,” she said. “We treated it like any other life skill they needed.”
Encourage gradual learning and build their confidence
Even when her sons were kindergartners, Kunkel would ask them to help her look for a vein and participate by doing some of the simple steps. There’s good reason to involve kids and help them learn gradually about self-infusing. Someday, they’ll want to enjoy the independence of going places without their parents, like to a sleep-over or to summer camp. When children learn to self-treat, it lifts some of the burden off of parents, too.
All kids and family situations are different, but children tend to learn best when they’re on the younger end of the range, said Cheryl McShea, a physical therapist who works with hemophilia patients. McShea has several years of experience at Western Pennsylvania’s Camp Hot to Clot, an annual summer camp for children who have bleeding disorders. The camp sponsors are the Western Pennsylvania Chapter of the National Hemophilia Association and the Hemophilia Center of Western Pennsylvania.
While kids enjoy the traditional fun of sleep-away camp, they also get a chance to also work on their self-infusion skills, said McShea, who is the camp’s health center coordinator this year. The camp sees teaching self-infusion as a collaborative effort that includes the parent, child, hematologist and camp medical director.
The week-long camp north of Pittsburgh sends families a pre-camp assessment to figure out if the child is ready to learn to self-infuse. The form asks whether the child knows his or her diagnosis; can they state the medication they use; and do they know the dose and how frequently it’s given? In addition, the camp assessment lists 18 steps that contribute to a safe and successful infusion. How many does the child already know how to do?
CSL Behring created a video to help parents spot “clues” a child may be ready to learn to self-infuse. For instance, is the child able to properly mix factor and is he able to use a calendar so he knows when it’s time for an infusion? Watch it.
Kids and teens arrive at camp with all different levels of proficiency, McShea said.
“Some kids can do everything but stick themselves. Some kids can do everything. Some kids can do almost none of the steps,” she said.
But that’s OK. The camp works hard to create an atmosphere of positivity and encouragement, she said. They call it “challenge by choice.” Kids also pair up to learn from one another. “The little kids really look up to the middles and the bigs. There’s something really special about that bonding,” McShea said.
And every year, one or two kids accomplish all 18 steps while at camp and receive a prestigious award: The Big Stick. It’s literally a big stick, festooned with feathers. It’s a stick because one of the steps in self-infusion is “sticking” one’s self with a needle, but the award symbolizes more than that. It means the child has mastered all the skills necessary to do a complete self-infusion with no assistance, McShea said.
It’s a journey for parents, too
Jessica Graham’s son, Jeremy, learned to self-infuse around age 13. Now, he’s 21 but Graham remembers when he earned his Big Stick award at Camp Hot to Clot.
“The nice thing about camp is the positive peer pressure. They see other kids infusing and they want to be able to show, hey, I can do this. They want to fit in,” said Graham, who is a CSL Behring community support liaison.
It can be a blessing that parents are not part of the equation at camp, she said. It’s emotional, especially for moms, who are often primary caregivers. As much as parents want kids to be independent, it’s hard to let go of this very important task. It might feel more comfortable to keep doing the infusions for them, because you know you’ll do it right. When parents show less anxiety, it helps kids feel less worried about learning to infuse themselves, experts said.
Kunkel remembers having to let go of some control and to acknowledge that each of her three sons was an individual. Each of them approached learning to self-infuse differently, she said.
The advice she’d offer parents is: “Cautiously encourage their independence and know when to back off.”
Kids will sometimes need help with infusions even after learning how to perform their first self-infusions. Independent and not-independent, back and forth, is often part of the learning process.
Graham recommends that parents keep it positive and give practical tips. For instance, help your child develop a familiarity with his own veins, she said. And remind kids to be well hydrated, which can help an infusion go more smoothly.
As with all milestones, there can be a lot of emotion and anticipation when a child is learning to self-infuse. But eventually, the time comes for all kids to take over this important task, Graham said. She remembers the morning she woke up and found empty factor bottles. Jeremy had given himself his own infusion during the night.
“I distinctly remember that – how amazing that was,” she said.