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FeedExceptional Care, Exceptional Place
A unique home for medically fragile children proves that sometimes love conquers all, even the gravest conditions.
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“Most of us have a rather simplistic view of life and illness,” he says. “We think that when you get sick, you either get better fairly quickly, or you don’t get better and you die. In reality, some patients are not sick enough to require hospitalization, but their medical complexity or need for round-the-clock care often means that families cannot care for them at home.”
Facilities like ECC are few, despite a growing need brought about by advances in health care and medical technology. “As recently as 25 or 30 years ago, some of these children might not have survived as long as they do now,” says Ed Woomer, administrative director for the department of patient and family services at Alfred I. duPont Hospital for Children.
Current residents range in age from 8 weeks to 18 years, but youths are eligible to live at ECC until age 21. Some of the children will live there for years, perhaps until they age out and move to an adult facility. Others, like Julianna, reside at ECC for a few weeks to a few months, as they transition from hospital to home. ECC also cares for children at the end of their lives.
In addition to medical and residential care, the children receive extensive physical and developmental therapy according to their needs. During the day, while the school-age children are off attending local public schools, therapists and nurses interact with the younger children in the play therapy room. Children also spend time in the multisensory room, which has light, sound and touch elements that can be adapted to the specific needs of children.
“Some children with cortical visual impairment, for example, can only see things against a certain background color, so we can make the whole room that color,” explains director of nursing Tracie Martin.
ECC’s practices are on the cutting edge of what is known about how to help students with cortical visual impairment, says Mark Campano, coordinator of Delaware’s Program for Children with Deaf-Blindness, which works with several of the children who live at ECC. It’s just that sort of progressiveness and concern that sets ECC apart.
“I have worked in the deaf-blindness field in five states and for 12 years,” Campano says. “It’s rare to find a place where the people want to find out what works best and not just what’s adequate.”
Many of the children who go to ECC are those some might consider “throwaway kids,” says activities nurse Cathy Burrows. “They are kids for whom there are no expectations that they will improve, that they will be able to walk or to learn or to come off a ventilator,” she says.
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