After each of their sons’ births, Denise Callarman and Leann Lazzari learned that, in addition to the colorful crib and fully stocked changing table in their sons’ nurseries, they would need a few other pieces of equipment. Enough equipment, Callarman recalls, “to rival most emergency rooms.”
A ventilator here. An I.V. pole, oxygen tank and carbon dioxide monitor there. And a backup battery just in case.
When they met years later, each found the constant care of a medically fragile child overwhelming.
Callarman of Westmont remembers the first six years in the life of her 12-year-old son, Jacob, who was born without an esophagus and with other problems. “He was ventilator-dependent 24 hours a day,” she said. “Three or four days a week with little or no sleep was not uncommon for me.” And though caring for Jacob was wonderful and grueling at the same time, she knew from her own experience (14 surgeries before she was 5 for birth defects and kidney problems) how much Jacob needed her love and attention.
But this intense physical and emotional care took a toll.
Callarman and her husband, Tim, needed sleep. They needed to spend time with their other two children and time with each other. But because there was (and still is) a shortage of skilled nursing care, respite from the constant strain of caring for Jacob was impossible.
Relatives or baby-sitters couldn’t help because they simply didn’t have the medical know-how to keep their son alive.
Leann and Patrick Lazzari of Warrenville faced similar obstacles caring for their son Danny.
Because sending Jacob or Danny to an institution was unthinkable, each family cared for their son 24 hours a day, seven days a week, all day, all night. They had no option.
During those sleepless nights, Denise Callarman “wrote a few [proposals for] grants and proposed a few legislative initiatives. I had a rule: two phone calls, two letters a day. If I did that, I was happy.”
That was in 1991. Eight years later, after enormous bureaucratic hurdles, Respite House opened its doors to medically fragile children, providing them a home for as much as two weeks at a time so their parents can catch up with the rest of life. Callarman developed the concept and, soon after, Leann Lazzari joined the cause.
Callarman sees Respite House, the first home of its kind, as a place where parents can “find an alternative to long-term or institutional care for medically fragile children. My idea was to provide all of the skills that parents do at home at Respite House . . . as opposed to families having no options and resorting to putting their child in an institution. Most parents want their child home. All they need is a little help. That’s what Respite House is about. It’s not about taking over, taking charge or doing something better than what a family can do. We say, from one family to another, `What can we do to help give you better quality of life? Not just for the child but for the whole family.’ We are one component of a child’s total care plan. Before, a care plan went from the hospital to home. That was it. So once parents brought their child home, they had no services to support them.”
The demands
Dr. Joseph Zanga, chairman of the pediatrics department at Loyola’s Ronald McDonald Children’s Hospital in Maywood, defines medically fragile children needing respite care as “children who require the attention of a caring and knowledgeable adult 24 hours a day, seven days a week. These children suffer from complex medical problems. They may require continuous tube feedings whether with a tube down their throat or a tube directly into their stomach.
“Many require respirators or at the very least someone to regularly suction their airways because they can’t deal with their own secretions. Some may need assistance for urination, bowel movements. Others need to be turned regularly to avoid pressure sores because they can’t turn themselves. And all the while they need the same love and affection that every other child requires for growth and development. No one individual or set of parents–no matter how concerned, conscientious or knowledgeable–can provide that kind of attention 365 days a year. Respite is critical not only to the health of a medically fragile child but to the health and well-being of the parents and family.”
Respite House’s walls aren’t made of cinderblock. The windows open. It doesn’t smell of soiled sheets or institutional food. It is a home. The gravel driveway, off Illinois Highway 53 in the Woodridge area, winds to a lush, manicured lawn. Flowers and gardens surround the sprawling one-story house. Inside, the first thing a child sees are brightly painted shelves and castle towers encasing a library. A soft checkerboard carpet covers the floor below a big-screen television. Rows of windows fill the space with morning light.
Space for equipment
There’s a living room with cushy couches and a fireplace where parents can sit and talk. The hallway’s walls, leading to rooms where children can stay from 1 to 14 days, are the canvas for colorful murals of bunnies, bluebirds, strawberries, trees, fluffy clouds and blue skies.
Each room is large enough to fit wheelchairs, ventilators and other equipment a child may need. The bathrooms have gurneys in each shower where children can be bathed with long, silver hoses.
The Lazzaris’ son, Danny, never visited Respite House. He died in 1997, two years before Respite House opened its doors. Leann thought about what her son would have liked when designing the interior.
“Parents and children walk in and say, `Wow.’ And that’s what we were going for. We didn’t want it to feel like a drop-off place. It’s supposed to be fun. We wanted to build a home children wanted to visit, where parents felt their child would be safe and cared for.”
Nancy Flynn, staff nurse with Merit Home Health Care, knelt to hold the hand of a little girl with cerebral palsy. The girl lay on a soft checkerboard mat below a big-screen television watching “Beauty and the Beast.” Special hand splints, made of black wetsuit material, enclosed the girl’s hands to ensure proper alignment of her wrists and fingers. Near the window, a volunteer hugged a little boy in a wheelchair and sang “Rock-A-Bye Baby.”
Difficult to count
“A lot of children,” Flynn said, “come here with cerebral palsy, which is an umbrella for many different problems whether congenital or birth trauma. All of the nurses here have pediatric experience.”
Glen Fujiura, associate professor in the Department of Disability and Development at University of Illinois at Chicago, said it is difficult to pinpoint the number of medically fragile children in the United States. “There is no definitive figure because the term `medically fragile’ includes children who are technology dependent to children with a significant developmental delays.”
Based on two major national health surveys, Fujiura said 5 or 6 children per 1,000 have significant disabilities. This percentage includes children considered medically fragile, depending upon the definition used.
Though the numbers are not overwhelming, the work needed to keep a child healthy often is overwhelming for parents.
Dr. A.J. Hotaling, associate professor of otolaryngology and pediatrics at Loyola University Medical Center in Maywood and a Respite House board member, believes that “Respite House allows families who keep these medically fragile or technology-dependent children at home to have a respite from caring for their child, knowing that the child is in a safe, secure and highly skilled `home away from home.’
“Respite House is not the home of the child; rather, it is a safe alternative where the parents and family can bring the child and get a break from caring for the child, a 24/7 job.”
Jill Hampe held a photo of her 12-year-old son, William. His smile beaming out from the photo, he was wearing his favorite NASA spaceship Halloween costume. After her husband died, Hampe had no help caring for William until Respite House opened. When William was much younger, her pediatrician said, “I’m going to hear about you in the news throwing yourself off the roof one day. We have to get William out of the house at least one day a week.” At that point, she sought help.
Overcoming barriers
“Some parents are afraid. Is their child going to be safe here, happy here? There are preconceived notions that Respite House is a nursing-care facility. Everything changes the minute you walk in the door. For our kids, it’s better than Disney.”
Cassandra Wade, coordinator for the ARCH National Respite Network and Resource Center in Chapel Hill, N.C., said many parents face emotional barriers when accepting help.
“Some parents are afraid that the person caring for their child won’t be able to provide the best possible care,” she said. “They ask, `Am I going to look bad in other people’s eyes if I ask for a break?’ Or, `Am I failing in my responsibilities as a parent?’ A lot or parents think it’s a weakness. We believe that asking for help is a sign of strength.”
Dr. Mary Keen, medical director of pediatric programs at Marian Joy Rehabilitation Hospital and Clinics and also medical director of Respite House, has learned that “there are a lot of heroes out there. Parents [of medically fragile children] are truly heroic in everyday life. Some people, who don’t have medically fragile children, consider respite a luxury. A day in the life of a parent, or just a few hours, would help them realize that respite is not a luxury but a true need that should be recognized and provided on a regular basis–not just for the health of the kids but for the health of the families caring for them.”
Listening to parents
Parents of medically fragile children become part of a team, according to Dr. David Jaimovich, chief of pediatric critical care at Hope Children’s Hospital in Oak Lawn and a former Respite House board member. They work with occupational therapists, social workers and skilled nurses to keep the children alive.
Jaimovich, who has cared for medically fragile children for 15 years, pointed out that “one of the things young doctors forget is to listen to the parents. The parents of a medically fragile child know more about that child’s illness than anyone. On top of that, they know more about the child and what the child’s needs are. If they say, `He doesn’t look so good,’ I listen to them.”
In 1995, the Illinois legislature amended the Alternative Health Care Delivery Act to include children’s respite-care centers, clearing the way for licensing and operation of children’s respite-care centers.
Then came the actual licensing process through the Illinois Department of Public Health and the Department of Children and Family Services, the property purchase, house renovation and fundraising. For people who already had their hands full with special-needs children, it’s a wonder Respite House ever opened its doors.
In 1997, as a DuPage County board member, Patti Bellock worked with Callarman and Lazzari to request zoning permits, apply for licensing and obtain a special-use permit.
Now a Republican state representative for the 81st District, she is committed to Respite House because “it’s one of a kind. The dedication of the volunteers is unbelievable. It’s a little miracle.”
Judy Eichmiller, Respite house chief executive officer and executive director, pointed out that the business end of the Respite House miracle relies on corporate sponsors such as McDonald’s Corp. and contracts through the State of Illinois.
A unique place
“In the past, we’ve been blessed with corporate donations, and we’re trying to step up that effort. Because we’re a different class of medical care, insurance companies aren’t quite sure what to do with us. There’s nothing like us in the whole state. But right now we’re at a critical junction. We’re desperately seeking donations and funding.”
A stay for a child isn’t necessarily cheap ($400 to $600 for a 24-hour stay depending on the level of care), but compared with the alternative of $1,000 or more a day in intensive care at a hospital, Eichmiller pointed out, this opportunity can be a lot more attractive.
And to parents who have had to maintain care around the clock for years, the respite may be well worth it.
Looking over Respite House, Callarman invited parents and children, “Come see the house we’ve built for you.”
