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Chronically ill kids say learning’s fun at health system’s First State School

June 9, 2008
“Community Connections” spotlights the many ways in which hospitals serve their communities. AHA members can learn more by clicking on the “Community Connections” icon at www.aha.org.

All Danielle White wanted when she was a teenager was to feel and be treated as normal by her fellow classmates. In 1991, at the age of 13, she was diagnosed with myasthenia gravis – an autoimmune disease that causes muscle weakness and fatigue. Taking medications three or four times a day, leaving class early because she couldn’t get on the school bus without help and missing classes altogether due to her illness made her feel like an outcast, and put into jeopardy whether she would even be able to graduate from high school.

In 10th grade, White enrolled in Christiana Care Health System’s First State School. Located at Wilmington (DE) Hospital, the school offers kindergarten through 12th grade classes for children and adolescents suffering from chronic illnesses who would otherwise be homebound.

In 2007, First State School was a NOVA Award finalist. The award honors local partnerships that build healthier communities.

“I definitely wouldn’t have graduated if it weren’t for First State School,” said White, who called the school “a warm place to be” because everyone was so understanding and knowledgeable about her illness.

Now a 30-year-old wife and mother, White is studying education and behavioral science at Wilmington University, and hopes to return to First State School as a teacher. “It is probably the best thing that ever happened for kids like me.”

First State School first opened its doors in 1985 as part of the pediatric inpatient unit at Christiana Hospital in Newark, DE, and later moved to Wilmington Hospital after White had graduated. The program strives to give students as normal a school experience as possible. Colleen O’Connor, the school’s program director, said it’s the same as a traditional school, “except it’s got the medical stuff in it.”

Students attend classes in a facility that is separate from the main hospital building so they don’t feel as though they are taking classes in a hospital. There are three classrooms, a computer lab, an art room and a dining room.

“They have lockers, there’s a graduation ceremony, we have a yearbook and this year we even have a school chorus,” said O’Connor, illustrating how the school is similar to “normal” schools. 

But there is a difference, even beyond the “medical stuff.” With just 18 students, each of whom suffer from some condition, they’re a close-knit bunch, said O’Connor. “At times, they become like brothers and sisters. When one is going to have surgery, or is going to be out sick or is having chemotherapy, they are there for them and really support each other.”

Students also receive monthly family therapy, weekly group therapy and individual therapy sessions to help them deal with their feelings surrounding their illness. “We help them figure out how to take care of themselves and sort through normal kids’ stuff,” said O’Connor, who added that students at First State School, aside from their illnesses, experience the same adjustment issues as other kids. They wonder about dating, what they’ll do about college or work, etc.

Independent evaluations of the program demonstrate that it has reduced emergency department use and inpatient hospitalization and has increased school attendance.

O’Connor, who has spent the past 22 years working in different capacities at First State School, said she and the other staffers learn as much from the students as the students learn from them. “It’s amazing what these young people have to share with us and everything that I have learned from each student,” she said. “They know much more than any of us who have any kind of degree behind our names.”

By Matthew Malamud