Matt Olovich was about 11 years old when he attended a bleeding disorders camp in his home state of Indiana. Now 20, he remembers it as a formative moment in managing the care of his severe hemophilia A. “At camp, they basically helped you infuse yourself,” he says. “When I saw that, I was like, ‘Well, that’s something I kind of want to start doing.’”
So, with support from his parents, Matt learned to self-infuse, which has allowed him to participate in sports, particularly baseball, at a high level. He was recruited to play for the baseball team at Franklin College in Franklin, Indiana, where he is now in his sophomore year.
Managing his hemophilia as a busy college student and athlete is challenging, he admits, but it wasn’t that big a change. After all, Matt and his parents have been training for this his whole life.
Matt was 7 months old when he was diagnosed with severe hemophilia A. His father, Ken, a pharmacist, sowed the seeds of self-management early on. “We didn’t want him to be just a passenger in this whole process,” Ken says.
Ken and his wife, Julie, would always explain to Matt what was happening and why it was important. Gradually, they let him take bigger steps in his medical care. “My parents would help set up the appointments, and then I would go to those appointments on my own,” Matt says.
Everything was going to plan until Matt faced an unexpected challenge just before he turned 17: a torn ACL that sidelined him from playing baseball and required surgery and months of recovery.
While tough, the experience provided Matt a dry run for managing his own care. “We had to really stay on top of factor and stay in touch with the treatment center,” he says. Ken adds that Matt also learned the importance of rotating injection sites to avoid overusing a vein.
Nurse practitioner Brittany Savage is one of the people supporting the Olovich family through this transition phase. She is the bleeding disorder transition nurse practitioner at the Indiana Hemophilia & Thrombosis Center (IHTC) in Indianapolis. IHTC’s Empowering Development and Growth through Education (EDGE) program, which Savage helps administer, assists families with the pediatric-to-adult transition. Savage works with patients starting at age 13.
These days, Matt self-infuses every other day, sometimes more when he has a game. He sees adult healthcare providers. He doesn’t yet order his own factor because it’s been easier to keep a supply at the family’s home, less than an hour from campus. “Because he’s not too far away and given the cost of this medicine, we just have it come to our house and then he comes and gets what he needs,” Ken says. “It’s up to him to tell us how much he has on hand and when he needs more.”
Increasing Independence: How to Help Your Teen
If you’re the parent of a child in the transition phase, you want to know the challenges ahead and how to help your teen master the skills he or she will need. There may be some difficulties for you too in this process.
• Maintain oversight.
As you assign more responsibility to your children, verify that they are following through (for example, by checking infusion logs and factor supplies). “They’re still growing up, and they’re still learning things,” says nurse practitioner Brittany Savage of the Indiana Hemophilia & Thrombosis Center.
• Let them practice communication skills.
Take every opportunity to involve your kids in communication about their care. Savage recommends making medical phone calls on speakerphone so your children can hear how the conversation goes. In time, they can practice talking and become more comfortable.
• Talk about transition milestones well ahead of time.
“We try to have conversations two or three years ahead,” says Ken Olovich. For example, the next major milestone for Matt will be obtaining his own health insurance. “We’re just starting those conversations of ‘what does that look like?’” Ken says.
• Tap into personal motivators.
Savage recommends identifying your children’s motivation for caring for themselves: “What’s in it for them, and why do they care?” Perhaps they have a goal to work in a certain field and want to be healthy for that. Maybe they don’t want to lose time away from friends. Maybe they want to keep their joints healthy to participate in sports.
• Let your children’s trusted friends get to know you.
As Matt shared his medical situation with friends at college, Ken and Julie Olovich welcomed them as much as possible. They invited his friends to their home and to dinner when visiting Matt. “I want to make sure that these people are comfortable in picking up the phone and calling me,” Ken says.
• Lean on your HTC for help.
“See if you can visit the adult center and meet the adult physician prior to transfer,” Savage says. Ask what they expect of your children at the transition, then work on those skills and that knowledge. “We’re all a team here, and parents and adolescents aren’t alone in working on this,” Savage says.
Just for Parents
• You will have mixed emotions.
With the focus on your child gaining new skills, it’s easy to lose sight that this is a transition for you too. “The parents are learning to transition from a primary caregiver role to more of a supportive role,” Savage says.
• Your child will make mistakes.
Allowing independence means giving your child room to learn and grow. “If parents can remember back to when their child was first diagnosed, it took them a while to learn some of these things too,” Savage says.
• Privacy rules change at 18.
“Once an adolescent turns 18, they’re a legal adult in the United States, and their healthcare information is confidential and protected from others, and that includes parents,” Savage explains. “Young adults can choose who, if anyone, can receive their healthcare information. That can be a shock to some parents.”