Redefining Family-Centered Care

Lisa Stammerjohann calls 6-year-old Heidi her “little miracle.”

Born with a severe heart defect, Heidi required several corrective surgeries to preserve her life. At nine days old, she underwent her first, at Nemours/Alfred I. duPont Hospital for Children in Wilmington. Against steep odds, she survived.

Still, the family knew Heidi would require a second surgery in her first year—one made even more complicated by her Down syndrome. She didn’t respond well. What was expected to be a two-week hospital stay stretched to two months, as Heidi underwent two more open-heart surgeries and several catheterizations.

“Every day brought some new complication,” Stammerjohann says. “We almost lost her half a dozen times. They almost had to amputate her leg once. Finally, the doctor said to us, ‘I don’t know how to tell you this, but she’s not recovering. It may be time to talk about quality of life.’ We knew he was saying, ‘Do you want your daughter to die here or at home?’”

After that discussion, a nurse suggested they dress Heidi “like a little girl.” Her mother had never bought Heidi clothes, fearing she’d end up buying a funeral dress. The next day, the nurse presented two new spring frocks. 

“Why?” Stammerjohann asked. 

“I just have hope that she’ll live,” the nurse told her. 

Two days later, with no change in treatment or medication, Heidi began to improve. Two weeks later, she was home in time for her first birthday. 

“I felt like I became part of the Nemours family,” says Stammerjohann. “We were never alone. They totally embraced us from the time of diagnosis. We were overwhelmed with kindness, with professionalism, with extreme family-centered care by everyone from nurses to housekeepers to social workers.”

Vowing to give back to the hospital in any way she could, Stammerjohann joined the hospital’s Family Advisory Council in 2010. She was elected council chair last year, and is now part of the most significant development at the hospital since the first duPont hospital opened in 1940. She and her colleagues have teamed with staff, administrators and members of the hospital’s Youth Advisory Council to design a state-of-the-art expansion to improve service to patients and families. 

“Family-centered care” may be the buzz-word, but the intent couldn’t be more sincere. The 450,000-square-foot addition goes on line this month. Chief among its features: Every patient will have a private room. 

One can’t help but think of ocean waves when first glimpsing the five-story addition’s two curved towers. Rising 100 feet above the Nemours estate, both are sheathed in panels of blue glass, their 144 patient rooms arranged on the perimeter for views of the famous gardens. 

Unlike the cramped two-person hospital cells most of us know, every room here is a generous 230 square feet. Each can be quickly converted to an intensive-care space. There are separate areas for the patient and clinicians, plus a family zone with a bed and television. Wood panels conceal storage and medical equipment that can seem scary to young patients. 

Eight-room units cluster around a so-called pocket park, each with a public computer station and a playroom. Solariums on every floor provide bright, tranquil places for visitors. Appointed with comfortable furniture and soothing art, “serenity rooms” offer privacy for doctor-family consultations, a few moments of solitude or “just a good cry,” says associate administrator Kay Holbrook. 

Hallways curve to shorten the line of sight, so there are no long, dim, narrow corridors. To keep passageways neat and safe, equipment is stored in carefully camouflaged closets and cabinets. The core of the new towers houses nurse stations, conference areas, medicine and supply rooms, and laundry areas. Patient meals are delivered via interior lifts. 

Except for the nurses’ stations—sunny, uncluttered spots, where staff members are easily accessible—all functional areas are hidden from the visitor. “As a nurse, I’m very clear about whether I’m on stage or off stage,” says Holbrook. “It’s very important for families and clinicians.”

The expansion also includes a new emergency department—a Level I trauma facility that serves 50,000 a year—and
increases the previous 29 exam rooms to 44. There are separate entrances for the public and ambulances, along with an entrance for disaster patients who must be treated swiftly or need to be isolated. 

Everything was designed to optimize care. “But I [also] think there’s a wow factor to it,” says Dr. Roy Proujansky, chief executive of Nemours Delaware Valley operations. 

The wow comes, in part, courtesy of the entrance’s atrium, a glass-enclosed space that spans 80 feet and all five stories between the two towers. Facing the Nemours estate, it’s visually stunning—a place where functions for donors and other community events can be staged.

Left to Right: Dr. Magee L. DeFelice of A.I. duPont Hospital for Children is one of this year’s Top Doctors. See page 110 for a list of Top Docs for Kids.; Dr. Roy Proujansky, chief executive of Nemours 
Delaware Valley operations, was among the medical 
staff that helped design 
the $275 million expansion, pictured in the background.; Kay Holbrook is associate administrator at the hospital..; To repay A.I. duPont Hospital for Children for saving her daughter Heidi’s life, Lisa Stammerjohann joined the Family Advisory Council that consulted 
on the new expansion 
of the hospital.

The new 450,000-square-foot addition features 144 patient rooms.

The atrium also serves a more serious purpose: movie night. Thanks to a screen and projector in the ceiling, kids from across the hospital can gather to watch from balcony-like areas on every floor. There are even special alcoves for those confined to bed. “Some children are here a long time,” Holbrook says. “We need to maintain normalcy.”

Common areas are decorated with 300 works of art by local youngsters. Kids respond to kids, Holbrook says, and many recognize works made by their friends. “Delaware is small,” says Proujansky. “That community sense needed to be re-created in the building.”

The Nemours/A.I. duPont expansion began with a capital campaign to raise more than $25 million for the $275 million project. For the design, architects and administrators sought advice from children and families from the start. “They didn’t build, then ask questions,” says Stammerjohann. “They asked questions first.”

Working in pre-built mock patient rooms elsewhere on the campus, parents advised on everything from the placement of hooks for diaper bags to the number of windows in a door. They suggested building the solariums, serenity rooms and pocket parks as places of refuge, and they tested sofas and chairs for comfort. They were consulted on paint colors and lighting options—even counter lengths and placement of electrical outlets. “‘Where can I plug in my phone?’ seems like a minor thing, [but it’s] big when you’re in that moment,” Stammerjohann says.

All the input was balanced with the concerns and needs of clinicians. How long would it take to move an intensive-care patient to an operating room? Could natural light be channeled to nurses’ stations? Would it be possible to extend overhead tracks from any part of a patient area to the toilet room?

“The Family Advisory Council had veto power, and sometimes they surprised us,” says Proujansky. “We originally designed with two doors in every room. They told us there was too much noise, too little privacy.”

Most members of the family council had experienced long stays at the hospital, so they wanted to be sensitive to clinicians’ needs. “I didn’t want it to be so family-centered that it was self-centered,” Stammerjohann says. “If something is needed to resuscitate my child, I want that to happen. It’s a hospital, not a hotel.”

The younger voices were heard, as well. “That was a first for me,” says project leader Lee Seggern, staff architect in the Nemours Corporate Facilities office, with a laugh. “I’ve worked with lots of committees, but never kids.”

“They call it ‘their’ hospital,” adds Holbrook.

Retired Realtor Dick Christopher, with fellow board of directors member Jack Porter, co-chaired the capital campaign for the expansion. The longtime head of Patterson-Schwartz Real Estate says the campaign was a first for the Nemours Foundation. “Professional consultants told us we could raise $12 million,” says Christopher. “I thought they seriously underestimated the value of this hospital to the community.” 

Funded by the Alfred I. duPont Testamentary Trust, the foundation has received more than $1.9 billion for preservation of the Nemours estate and care of children in Delaware and Florida since 1935.

Last year, the trust yielded $133 million, which allowed Nemours to provide $211 million in services. Some of that money is spent on research and preventive medicine, but a good portion goes to uncompensated care. The hospital can’t refuse treatment to any child, regardless of ability to pay.

That was a point Christopher made again and again to prospective donors. Apparently, it worked: Eighty-five percent of his prospects gave. “Most people have no idea the breadth and depth of the hospital’s involvement with this community,” he says. 

So far, the campaign has raised more than $25 million toward Christopher’s $27 million target. “The capital campaign was the first opportunity to have personal considerations about who we are and what we do,” he says. “Having the expansion to ground that conversation is fantastic. It’s a chance to broaden our relationship with the community.”

And that’s a good thing because, after nearly 75 years, many Delawareans still don’t know what happens there. On one end, Nemours/A.I. duPont offers childhood literacy programs and help to dyslexic students. On the other, it provides care to 85 percent of the Delaware children who need inpatient treatment annually, while conducting cutting-edge research.

The facility began as the A.I. duPont Institute, a pediatric orthopedic hospital. It became a full-service pediatric hospital in 1984. As for this latest transformation, it began just as Nemours was completing construction of a new $450 million
children’s hospital in Florida. 

Delaware Attorney General Beau Biden asserted that, in building the Florida facility, directors of the Nemours Foundation were neglecting their commitment to the children of Delaware. The courts disagreed. The new expansion stands as proof of that commitment.

“When we finish this, we’re going to turn right around and start on the old building,” says Proujansky.

That renovation will improve many outpatient services. When it’s finished, the hospital will be prepared to meet the needs of Delaware children for decades to come. “One could easily imagine that building will get us another 70 years,” Proujansky says. “Health care changes, so no one knows what it will be then. But that building is made to be adaptable.”