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For the first three years of her life, the simple act of breathing was too much for Julianna Swyka to accomplish on her own. Born after only 26 weeks gestation in June 2005, Julianna weighed less than 2 pounds, her body too undeveloped to function on its own.
Today Julianna is a chatty, vivacious, average-sized 4-year-old. Few people would guess that she spent her first 16 months living in medical facilities—three months in the neonatal intensive care unit at Christiana Hospital, 10 months at Alfred I. duPont Hospital for Children, then another three months at Exceptional Care for Children, a 20-bed pediatric skilled nursing facility in Newark.
Julianna’s guardians, Judy and Cossie Gibson, credit Exceptional Care for Children with easing their granddaughter’s transition from hospital life, making it possible for the little girl to live with them in their Elkton home.
Even after her discharge from Exceptional Care in September 2006, Julianna remained dependent on medical technology. She was fed through a feeding tube and breathed through a tracheal tube.
“With the tracheotomy, emergencies happened almost every night,” Judy says. “Julianna would roll over and twist the tubing, so her breathing would get blocked, and that’s something you need to learn how to deal with. The help and supervision we had at ECC allowed us to become more experienced at caring for her ourselves.”
Exceptional Care for Children is the first and only long-term pediatric residential facility of its type in Delaware. Its existence was a long-time dream of registered nurse Jeannine Winsness and physician Stephen Falchek, a division chief for the Nemours Foundation in Wilmington, as well as others in the pediatric medical field in Delaware and Pennsylvania. Falchek serves as ECC’s medical director and chairman of the board.
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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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Despite sometimes dire predictions, many of the children develop far beyond expectations. One toddler entered ECC seriously undersized and unable to tolerate any stimulation, Martin says. A year later she could walk, follow simple directions, say a dozen words and understand many more. She bounces happily to the beat of Gwen Stefani’s “Hollaback Girl.”
“Some kids come in and double in size within a few months,” Martin says. “There has been no change in their diet. They are just eating more. The only explanation is love.”
“Love is an amazing thing,” says play therapist Donna Hartzell. “It gives the children the will to live and to try harder.”
Valetha Richards and her fiance, Kevin Haile of Wilmington, have seen their son, 2-year-old Devone, make tremendous progress at ECC. Devone had been a perfectly normal toddler who was beginning to walk at age 1 when several seizures damaged his brain. He was left with seriously impaired vision, and he was unable to walk or to swallow food.
“If you had seen him, you wouldn’t have thought he could make it,” Richards says. “The doctors said that all we could do was pray. They did not know what he would be able to accomplish. He just cried continuously.”
That was in June 2008. Devone has come a long way since. “He can calm himself down, and he responds to music and to talking,” Richards says.
Before ECC opened, local children who needed long-term or transitional care remained hospitalized or were sent to a handful of out-of-state pediatric facilities, most often to the Voorhees Pediatric Facility’s Residential Program in New Jersey. “Kids would go to these facilities, but families would not be able to visit often because of the distance and the lack of public transportation,” Woomer says. “It is much better now that local patients and their families have a facility closer to home.”
Most of ECC’s residents are Delawareans, though some come from nearby Maryland and Pennsylvania.
The staff at ECC encourages families to spend as much time as possible with their children. They can visit in comfortable sitting areas, participate in therapy, and eat meals family-style in the dining room with residents, staff and other families. One long-term resident has sleepovers in her ECC room several times a month with her mother and siblings, says Kareylenn Hammond, director of social services and development at ECC.
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All residential care and pediatric facilities strive to preserve family involvement, Falchek says, but “ECC generally has the families of patients as a starting point from which our care plan proceeds.”
When ECC opened in February 2006, there were three patients. Now 21 children (including a set of twins) live in ECC’s 20 bedrooms. Local wildlife muralist Dan Gotel has painted the bedrooms in themes such as Four Seasons or Fisherman’s Wharf. There are even paintings on the ceilings. “It’s the first thing the children see when they wake up,” Hammond says.
Gotel also designed ECC’s mascot, Sheldon the Turtle, whose shell is emblazoned with a heart. The turtle’s shell represents the love, care and protection that ECC provides.
ECC’s residential facility and administrative offices are set on 7½ wooded acres in a southern Newark neighborhood off West Chestnut Hill Road near Del. 896. The building, originally constructed in the 1990s, had briefly housed several programs, but had sat empty for years. ECC bought the facility in 2004 and began to renovate. It opened in stages as money became available. ECC hopes to expand again soon, due to the need for its type of care, Martin says. At times, several children have been on ECC’s waiting list.
The goal is to raise enough money to convert the third floor into 10 additional bedrooms for long-term residents and an 11th room so that ECC can begin offering respite care to families who are caring for children who are seriously ill or dependent on medical technology.
A $1.5 million capital campaign kicked off in April 2008. About a third of the money has been raised thus far. Those families whose children have already benefited from ECC know how lucky they are.
“We could not care for Devone the way they do at ECC,” says Haile. “They are very hands on. He gets a lot of attention and you know everyone there loves him so much.”
Richards agrees that ECC is exceptional. “If Devone can’t be home with us,” she says, “ECC is the place we want him to be.”