For all of his seven years, little Dean Havey has been coming to Riley Hospital for Children for treatment of cystic fibrosis, a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
Some of those visits for Dean are easier than others. They involve just watching a movie and breathing. Simple, right?
Actually, Dean is participating in an important study, one of dozens offered to Riley patients with cystic fibrosis. Miriam Davis, a clinical research nurse in the pediatric pulmonary unit, works primarily with kids who have CF, and she loves every minute of it.
On this day, she invites Dean and his mom, Rachael Havey, into her small office on the fourth floor of the Riley Outpatient Center. Davis has known Dean since he was 3, when his mom enrolled him in his first study.
Today’s test is a non-invasive breathing study performed while Dean watches a movie on a tablet and breathes into a tube. The idea is to measure lung function while the child is at rest.
“It’s effortless for them,” Davis said. “No pokes, no prods, no owies.”
Dean is a little squirrelly today, but Davis gets him settled in to watch “Gnome Alone,” a PG-rated computer-animated fantasy film.
There are rules for this study. “No talking, sit really still and just breathe,” Davis reminds her young patient. Once he gets the giggles out of his system, he complies, watching the screen intently for about 10 minutes. It’s the first of at least two mini movie sessions on this day.
Davis, who has worked at Riley since 2005, has been a research nurse since 2014. Families who agree to participate in the studies are helping to identify better treatments for CF in particular, she said.
New medications are exciting because they are not treating symptoms; rather, they are corrective drugs, Davis explained. “For these medications to be approved and to see the effects that they have on the quality of life for these children is incredible.”
Not all parents want their children to participate in studies (and school-age kids get a say in this too). It might depend on how time-consuming and/or invasive the study is and potential side effects, but CF patients and their families are motivated for research, Davis said.
Patient prognosis has improved greatly over the past 20 years, she said, meaning children born in the 2000s can expect to live into their 40s and 50s as a result of new treatments. In 1962, the average life expectancy of a child with CF was just 10 years old.
“I think that’s what motivates these families,” Davis said. “They are very eager to help their children. And they know that with research, if it doesn’t necessarily help their child, it could help somebody else.”
Dean’s mom agrees. “We just want to help drive the work,” Havey said. “If we’re not part of learning new things and helping our doctors find out more information that can help other CF patients, then who else is going to do it? We know how important the research is, so that’s why we’re here.”
Davis, who has four children of her own, says she loves all of her patients. “I truly enjoy my work and love the relationships that I develop with the patients and their families.”
What’s so special about these kids? “Their heart,” she said. “They have to go through so much, and they do it with a smile. They’re strong. They are superheroes.”
Davis will say goodbye to these families and to Riley at the end of the year to take a job in research at UNC Children’s Hospital in Chapel Hill, N.C., but she’ll leave part of her heart here.
“Riley is an amazing place. It sounds cheesy, but miracles do happen here.”
-- By IU Health senior journalist Maureen Gilmer