“She was turning bluer, not pinker, as a healthy newborn should be turning,” says Burrows. Amanda was whisked to Christiana Care’s intensive care unit, then to Alfred I. duPont Hospital for Children. In seconds, Jim and his and wife Mary Beth’s world was turned “upside down.”
The young father had grown up in Delaware. Until Amanda’s birth, he had never set foot in duPont. Over several weeks and multiple surgeries to correct a rare heart birth defect known as Shone’s Syndrome, Jim and Mary Beth would come to know duPont intimately. It was their home for the first three months of Amanda’s life.
“Mary Beth would stay there during the day, and I’d relieve her in the evenings, moving my work clothes into one of the special living areas set up in the hospital’s cardiac unit,” Burrows says. “Still not knowing what was going on in those first few days, it was nice to know we’d be able to stay close by.”
Score another one for the Small Wonder. Having a facility such as duPont for all Delawareans—and a small percentage of out-of-state patients who are drawn to duPont by its world-class reputation—is an indescribable benefit.
“Historically, many world-renowned orthopedic specialists received their training here at duPont,” says CEO Tom Ferry, who’s been associated with the facility for 31 years. “DuPont is built on the premise that children are not just little adults. They don’t understand things the way adults do. They have fears we don’t have and tolerate pain differently.”
Parents of very sick children also have fears. Nor do they tolerate pain the way parents of healthy children do, which is why duPont has always maintained an approach that treats the entire family.
“I remember one night after Amanda had been returned from a procedure,” says Burrows. “Her intensivist, Dr. Ellen Spurrier, was standing over her bed, saying, ‘We’ve got to figure out how to turn this around.’”
Throughout the ordeal, Burrows says, no one spoke of odds of recovery or rates of survival. “Their attitude was always, ‘As long as there’s hope and a plan…’”
Burrows says words can’t describe how he felt. “Amanda was the sickest child in the unit. But there were nine or 10 other sick babies there, as well. Yet we both felt from the beginning that Amanda had been adopted by the entire staff as one of their own.”
Registered nurse Michelle Wagner has worked in pediatric care for almost 20 years, the past 10 at duPont as nurse manager in the oncology section. Wagner says duPont’s focus on family-centered care is one of the most important elements of the hospital’s culture.
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“We strive to develop a relationship with the entire family—care for the child and education for the parents,” she says.
Most rewarding for her is traveling with the family on its journey with the child. To help the success of that journey, duPont formed Healing Touch, an alternative care approach to treatment two years ago.
“It brings added support to patients and their families in terms of pain management and offsets some of their anxieties in a more relaxed and nurturing environment,” says Wagner.
Beth Carlough, child life coordinator at duPont, has been with the hospital for 29 years. She deals with the emotional aspects of child care. “Our aim is to put the child at ease and educate at their level,” Carlough says. “If surgery is involved, we’ll describe what will happen, using dolls and puppets to demonstrate and relieve some of the fear of the unknown.”
Carlough also manages the hospital’s activity room, where kids can normalize their time at duPont with games, crafts, Ping-Pong and pool tables, a piano and other forms of entertainment organized according to age group.
“We want kids to be kids here as much as possible,” says Carlough. “Nothing medical is permitted in the activity room. Doctors and staff can visit patients, but they cannot perform any medically related tests or exams while here.”
Established mainly to treat children with polio, duPont began to broaden its expertise in the 1980s. It now includes such specialties as cardiac surgery and bone marrow and organ transplants. Though areas of treatment and care have changed, the patient hasn’t.
“In a typical hospital, the child population is maybe 6 percent or 7 percent,” says Ferry. “Here at duPont it’s 100 percent.”
In some respects, duPont operates in miniature, reducing sampling and other procedures almost microscopically to levels safe for its tiny patients.
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“You can’t take the same-size blood sample from a newborn as you can, say a 12-year-old,” Ferry says. “Same goes for dosages of X-rays and other tests.”
Ranked among the best in the nation by U.S. News & World Report’s Best Children’s Hospitals (it is ranked sixth in orthopedics), duPont is by no means content to rest on its laurels or reputation. DuPont will soon add a five-story patient tower of private rooms for patients, which will open in 2013. The rooms will be larger than usual to accommodate the large gatherings of staff and family that tend to accompany child patients. “The rooms will be designed as more natural living accommodations, more comfortable and less hospital-like,” Ferry says.
DuPont will remain in Delaware in perpetuity, Ferry says, thanks to the largesse of the Nemours Foundation. Between 1980 and 2009, Nemours’ contribution to the financial stability of duPont grew from $22 million to $108 million. Much of that money was used to close the gap in revenues caused by shortfalls from Medicaid, the costs of charity care—which totaled $4 million—and uncollected debts, which reached $25 million in 2009. None of that seems to worry Ferry.
“DuPont will always be here because Nemours will always be here,” he says. “Nemours is the safety net that will guarantee us the ability to provide the best care available, regardless of insurance.”
Staff provides care without any consideration—or knowledge of—a family’s ability to pay or their insurance situation, Ferry says.
One of the biggest rewards for Wagner is seeing former patients and their families return to visit. “That makes such an impact on what we do here,” she says.
Burrows is now a member of duPont’s Family Advisory Council. The council meets monthly with hospital staff to give advice on the improvement of care.
“I look forward to going there now under far different circumstances than before,” says Burrows. “I go because of the bonds my family developed there, but most importantly because I believe that Amanda is with us because of duPont.”
And what does young Amanda think of duPont? “Much what any 3-year-old would think,” says Burrows. “She knows when see sees the doctor and feels the crinkling of the paper on the examining table that she’s not going to like what’s about to happen.”
But Burrows knows now that duPont is so much more than crinkling paper on an examining table. “Clinical care without the family-care environment would only be only half the battle.”