Photos by Ron Dubick
English teacher Karen Rabik works with Reanna Skinner (center) and Nashawnte Johnson.
Dr. Janet Kramer knows the importance of sick kids attending school. She should. She established First State School in Wilmington to give seriously and chronically ill children the opportunity to get an education while they were receiving medical care. “For children, school is the equivalent of work for adults,” she says. “Adults who are seriously or chronically ill will have a lot of depression relating to the fact that they don’t feel that they are contributing members of their families. Kids go through the same thing in relation to school.” Located at Wilmington Hospital, First State School was the first of its kind in the nation when it was founded in 1985.
Other hospitals offer classes for patients while they’re in the hospital, but First State serves kids who are no longer in the hospital and would otherwise remain homebound. Now, approaching its 30th anniversary, the school—co-administered by Christiana Care Health System and Red Clay Consolidated School District—not only continues to flourish, but also has become the model for educating other kids too sick to go to a regular school but not too ill to learn. Children’s Hospital in Denver and the Children’s Hospital of the King’s Daughters in Norfolk, Va., have established similar schools. Both institutions consulted with Kramer—an internist and retired director of Christiana Care’s division of adolescent and young adult medical services—to plan their programs.
First State enrolls up to 22 students from kindergarten through 12th grade. The children, who are referred by their physicians, have a variety of ailments, including severe asthma, diabetes, sickle cell anemia, brittle bone disease and immunological disorders, among others. Most students are outpatients at Alfred I. duPont Hospital for Children. A few receive treatment at Children’s Hospital of Philadelphia, while others go to Christiana Care. Going to the school can be an adjustment for children. “It signifies that they’re really sick,” says program director Coleen O’Connor, who has been with the school since it opened. “But after the first or second week, they’re blended in and they’re happy. When it’s time to leave, we’re pushing them out.”
Program director Coleen O’Conner at the entrance to First State School.
Sixth-grader Nashawnte Johnson is just starting First State and already likes what she sees. “This is a good school,” says the 11-year-old, who has pancreatitis. “The staff is really nice, and I’m looking forward to the school year.” Ninth-grader Reanna Skinner agrees. This is her second year at the school, and she says First State is the best place for her to get what she needs. “They help you with your medicine and teach you what you need to know,” says the 14-year-old, who has diabetes. Although the focus is on academics, students also learn about their illnesses and how to manage them. A team of nurses visits the classrooms, taking vitals and administering medications and treatments. “We do as much as we can in the classroom so as not to disrupt their routine,” says Elizabeth Houser, one of three nurses at the school.
The goal is to get kids up to speed with their academics so they can return to their regular schools. Students stay an average of two years at First State, although a few stay all 12 years, O’Connor says. While First State may be a school for sick kids, it looks and functions like a regular school. Students arrive each morning on Red Clay school buses that pick them up from all across New Castle County. They go to their lockers, pledge allegiance to the flag, hear announcements and go to class. First State also has a mascot (the osprey), a yearbook (The Tal on), a student council, a prom, summer camp, a graduation/moving up ceremony and a steel-drum band that plays at graduations and other events. Students also go on supervised field trips, including an overnight stay at a surprise location. “We want to see how they handle their medical issues in a less-controlled environment,” says Houser.
The school is also a community whose members look out for one another. Nurse Mary Beth Lewis recalls the visits she made to a parent’s home in Claymont to teach him how to manage his daughter’s diabetes. Nurse Marilee Scarpitti, who has been with the school since the beginning, talks about the times she took kids home for a weekend when there were problems in the family, as well as the many medicine runs to students’ homes she has made with O’Connor. “A lot of what we do is volunteer, off Christiana Care time,” says O’Connor.
Coleen O’Conner (left) and Marilee Scarpitti, a registered nurse, have worked at the school since it opened.
Much has changed since the school opened in the pediatric unit of Christiana Hospital. Students changed the name from the School of the Chronically Ill Child and Adolescent to First State. The program moved to Wilmington Hospital in the early 1990s, expanded to include kindergarten and elementary school and increased its class size. Smart boards, iPads, iPhones and assistive technologies have become classroom staples. And problems such as AIDS and complicated pregnancies have been added to the list of childhood maladies. Deaths do occur. Then, memory sessions are scheduled to mark the passing of students who lost their battle with their illnesses. Plaques are also erected in their honor. “There’s a lot of persevering there,” says principal Kelley Brake.
Still, the school celebrates many successes. Since opening, more than 250 students have enrolled. More than 90 percent graduate, whether from First State or the school they transition to. And the majority of them go on to post-secondary education or jobs. Some students like Dominique Stevens have even found their life’s work at the school. Stevens, 20, who has myasthenia gravis, a neuromuscular disorder, graduated from First State last year and is now serving an externship there. She plans to work as a medical assistant, but her ultimate goal is to earn a bachelor’s degree in nursing “This place inspired me,” she says.
There is still room for improvement, administrators say. Kramer would like to see locations established in Kent and Sussex counties to make it easier to serve children living in those areas. Brake hopes that more electives will be added to the curriculum. “We have four teachers and two career pathways: a creative writing pathway and a science pathway,” she says. “I wish we had more opportunities for the students to get something in their area of interest.” And O’Connor looks to the day when schools like First State won’t be needed. “If there are still kids out there that are not having their needs met, then I want to expand,” she says. “But with advances in medicine, I truly hope that kids don’t need to come here, that they can be healthy.