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Film chronicles the impact of chronic illness
Dr. James Filiano could take samples of skin and blood and other bodily fluids from Samuel Habib, and then have them analyzed for clues as to what was causing the little boy's cerebral palsy.
He could recommend ways to regulate Samuel's metabolism and refer him to other specialists who could prescribe treatments for complications of the condition—complications that forced Samuel to return again and again to the Children's Hospital at Dartmouth (CHaD).
But Filiano, a pediatric neurologist at Dartmouth, couldn't give Samuel's parents a clear idea of what was causing the disconnect between the youngster's brain and his muscles. Nor a cure. Nor a crystal ball to see into Samuel's—or his family's—future.
Filiano could, however, offer an idea to Samuel's father, Dan Habib, then the award-winning photography editor of the Concord, N.H., Monitor. The suggestion came near the end of another long siege at CHaD for then-four-year-old Samuel; that stay was due to pneumonia following a tonsillectomy.
Share: "He said, 'Maybe you should document this,' " Dan Habib remembers Filiano suggesting. " 'Maybe you should take your background and share what it's like to have a child with a chronic condition.'
"At [that] point, I was just thinking about, 'How do I get through this day?' " Habib continues. "But it gave me an idea of something constructive. It was cathartic. It was something I could do."
Habib says making
the film "was cathartic . . .
something I could do.
More than four years—and a new job—later, Habib is now touring the region and the nation with his 58-minute documentary film, Including Samuel, sharing it with students, educators, and health-care professionals. Now the filmmaker-in-residence at the University of New Hampshire's Institute on Disability, Habib is scheduled to show the film in April to medical students, nursing students, and residents from around the Dartmouth-Hitchcock system and to lead a discussion after the screening.
Footage: The film, which includes
Habib's still photos as well as video footage, covers the efforts of Habib; his wife, Betsy; and their older son, Isaiah, to carve out a life for Samuel—and themselves—within the Concord school system and the community at large.
Efforts: Habib also interviewed four other New Hampshire residents with physical and —developmental disabilities and mental—health problems, documenting their struggles and the efforts of their families to find them a place in society.
Although the film focuses more on the educational system than on Samuel's hospital stays, doctor's appointments, and at-home treatments, medical professionals can learn a lot from it, according to Dr. Pamela Hofley, a pediatric gastroenterologist who treats Samuel at Dartmouth-Hitchcock Manchester. She says her children saw the film at their junior high school.
And "it's a good thing for medical students, nursing students to see," Hofley adds. It helps health-care professionals to have "a sense of what is it like to have a child like this in your home . . . to see the child outside of the office environment."
She says that in her practice, she more often sees children from troubled
backgrounds than from stable, middle-class families such as Samuel's. Nevertheless, she notes, "the film is good about showing that families like the Habibs really struggle, too." (For additional information about the film, as well as about upcoming screenings and discussions, see www.includingsamuel.com .)
Dan Habib credits DHMC caregivers like Filiano and Hofley with looking at Samuel and his family as more than a set of symptoms or an interesting case study. "We've had some great experiences with the Dartmouth system," Habib says. "We feel welcome and supported."
Future: And they continue to need that support as Samuel approaches age 9-and an uncertain future. "We will never stop looking for ways to keep Samuel healthy," Habib says. "As we do so, Dr. Filiano is just like a dog with a bone and will not let go until he figures out what's going on. At the same time, he's a very spiritual person. He understands the idea of living every day. As a human being, he's really helped us come to terms with this.
"It's a matter," Habib observes, "of, 'You should just enjoy what you have right now.' "
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