New childrens hospital designed for family centered care

February 10, 2015
Charlotte Edwards, who serves on a design committee to develop a new children's hospital, spent 118 days in a neonatal intensive care unit with her son Legare, who was born at just 25 weeks.

When Charlotte Edwards joined a design team for a new $350 million Children’s Hospital and Women’s Pavilion at the Medical University of South Carolina, she never imagined designers and architects would take her seriously.

After all she’s just a parent of a child who was born a preemie. Edwards’ son was born at 25 weeks with slim chances to survive. The profound experience she had while in the neonatal intensive care unit led her to switch careers. She has come full circle and is back in the neonatal unit, but this time as a nurse.

“I’m really enjoying it,” she said of her new job and getting to be a part of the planning for the $350 million hospital expected to open in 2019.  The new facility will replace the current 28-year-old MUSC Children’s Hospital, providing space for additional patients, expanded services and more spacious, family-centered amenities.

“It’s amazing that the architects and the planners really do take into consideration what the families have to say,” Edwards said. “They have changed some room designs and moved a room to another location because of family input. They have us involved in the process and are listening to our opinions. It’s been a thrilling experience.”

Matt Wain, chief operating officer of MUSC’s medical center and chairman of the steering committee for the new hospital, said having parents on the design teams is critical to the vision of optimizing patient and family-centered care.

“For a long time in health care, we’d just say, ‘Sit down, buckle up, and we’ll tell you when we get there.’ When in reality we’re all in a better place by including patients and families – our consumers if you will – as part of that care continuum.”

There are 20-plus design teams involved in the planning for the new hospital and every one of them, without exclusion, has a nurse, a doctor and a parent serving on them, he said.

“We think that’s the best way we can reflect the futuristic state of care that has to exist in our hospital. Our goal isn’t to replicate what we do today. It’s to build on the success that we’ve already had and transform care in a way that takes better care of kids and our families for tomorrow.”

The teams are debating details – big and small – of just what exactly does a family-centered design look like. So far, there are creative answers to that.

For example, many services are being centralized to save parents time and energy. One entire floor will be dedicated to the care of children with cancer. This unit will be located on the top (10th) floor of the hospital, providing these longer-term patients and their families with the hospital’s best views of the Ashley River. Another floor will be dedicated to the care of children with heart problems. This cardiac floor will provide a comprehensive array of services, including cardiac operating rooms, catheterization labs, a cardiac clinic and the state’s only pediatric cardiac intensive care unit and step-down unit.

Recognizing that it can be very challenging for families whose children are hospitalized several weeks because of an illness or accident, common areas are being integrated into the plans. There will be family respite rooms, children playrooms, and shared areas with kitchen, laundry and shower amenities.

“We know that letting kids be kids allows them to get healthy faster. We know that families in many cases didn’t expect to end up at MUSC Children’s Hospital that day. It changed their life due to a horrific accident or a diagnosis in a doctor’s office that they hadn’t expected. It really comes down to helping families heal, opposed to singularly looking at just caring for their child.”

General amenity areas in many hospitals, such as the cafeteria and other open spaces, typically are located on the ground floor. “Our patients have told us, ‘No, lift that up. Let us have more natural light and see outside.’ So we’re going to put our public areas on the seventh floor so they have commanding views of the harbor and the marsh areas in the distance – the things that are so Charleston and that people feel great about.”

Edwards said she she’s excited about new plans for the NICU, where rooms will be changing from an open-bay style to a single-room unit, where families will have more space and privacy.

“We were able to able to create quiet respite rooms in the NICU,” she said, adding that the 118 days she spent with her son in intensive care taught her how scary and overwhelming an experience it can be. There were days she wanted to be close to her son, but needed a little quiet, too. The respite rooms allow for that.

“It’s for when you need to get away from all the beeps and buzzes to take a moment to just reflect – whether you needed to say a prayer or whether you just need some space to yourself.”

Edwards, whose son now is an active 7-year-old soccer player, said she is giving her perspective on the design team as a nurse as well as a parent.

Family-centered care isn’t just about design and aesthetics, it also involves providing structure and space for health professionals to implement policies that support families. Edwards likes it that the new private, spacious rooms will make it easier to do kangaroo care or “kangarooing” that involves getting a mother or father to cuddle skin-to-skin with their sick or premature baby. Research shows the practice can have substantial health benefits for the baby.

“It’s wonderful for the babies for developmental milestones. It helps regulate their temperature, heart rate and breathing patterns. For the parent, it’s a moment you can bond with your child and, for a moment, feel like a mother.”

In a family-centered model, nurses help families learn as much as they can about caring for their baby before they leave the hospital. This is especially true in Edwards’ specialty since preemies tend to have more developmental issues. It’s important for the parents to feel like they are part of the care and to develop the best skills they can before taking their babies home. Nurses love that the new hospital will be based on family-centered care, she said.

 “We’re good at promoting for parents to be patient advocates. We want them to be the voice of their baby. I think that’s something we do very well in the NICU. We encourage families to ask questions. They are the ones at the bedside every day. Staff can come and go, but they are the ones who know their baby.”

Wain agrees. MUSC has a wide array of pediatric specialists, a Level 1 pediatric trauma center, which is the highest, and the new hospital will have the highest Level 4 NICU. Parents will have the support of the best of the best in pediatric specialties in state, but when parents walk out of the hospital they become, by default, a medical provider on the spot.

“The real test is our ability to create patient family-centered care, where family members are at the center of the decision-making process for their children’s health and are getting the knowledge to better understand the needs of their child, who may be very fragile, when they go home.”

Though design teams have made great progress in pinning down details of making the family-centered vision a reality, it will take a community effort to get the hospital built, Wain said.

“We know we’ll need $50 million in philanthropy at a minimum in order to be able to open the doors. To me there’s nothing more that represents everything that’s great about a community than a children’s hospital. The success of a children’s hospital is best reflected in the community it serves. It’s a wonderful partnership.”

Darius Rucker, a long-time supporter of the children’s hospital, is holding a Big Band benefit concert for the new hospital Feb. 17. Wain said he’s thrilled to see the momentum start to build.

“We appreciate people who are able to help us through whatever their means might be and, as a result of that investment, to feel that they stand beside us.”

Professionally, Wain said, the new hospital will be one of his proudest accomplishments.

“This might be the most exciting thing that we as health professionals will ever do and that is to design a brand new hospital that is built on a history of success, a history of our care teams doing great work with nationally-recognized outcomes and quality, and taking all that success and rolling it into a new state-of-the- art environment that focuses on the patient and their family,” he said.

“This will be the finest children’s hospital in America from a facility and quality standpoint the day it opens. What better investment is there than that?”

Highlights of the new Children’s Hospital and Women’s Pavilion

Private, spacious patient rooms

  • All patient rooms will be private, equipped to comfortably accommodate short or long stays by patients and their families.
  • Patient rooms in the intensive care unit (ICU) will double in size.
  •  Square footage in other patient rooms will grow by 80 percent.

Designed for family support

  • Each patient floor will have play spaces filled with natural light, which is thought to promote healing. They also will feature respite areas and shared spaces designed to promote a supportive community of care.
  • Families staying for extended periods will have access to kitchens, laundry facilities, showers and other conveniences.
  • The cafeteria will be located on a mid-level floor in the patient tower, a more centralized location that features views of the Ashley River and outside terrace seating.

Empowering families as partners in care

  • Each patient floor will have a conference room where medical teams can consult and collaborate with families in developing their patients’ care plan.
  • Expanded wireless capability will ensure that families remain connected to outside sources of health information, as well as doctors and nurses on their children’s caregiver team.

Expanded patient-care units and amenities

  • An entire floor will be dedicated to the care of children with cancer. This unit will be located on the top (10th) floor of the hospital, providing these longer-term patients and their families with the hospital’s best views of the Ashley River.
  • An entire floor will be dedicated to the care of children with heart problems. This cardiac floor will constitute the most comprehensive, dedicated heart center in South Carolina, with two cardiac operating rooms, two catheterization labs, a cardiac clinic, and the state’s only pediatric cardiac intensive care unit and step-down unit.
  • An entire floor will be designated for non-cardiac surgical procedures. It will house eight operating rooms, procedure suites and MRI scanners specifically designed and managed for the care of children. On the same floor will be a non-cardiac pediatric intensive care unit and step-down unit.
  • The Advanced Fetal Care Center will serve as a portal of entry to a continuum of integrated, specialized care for children born with congenital birth defects.
  • The hospital will house an expanded neonatal intensive care unit with private patient rooms, including some that can be easily reconfigured for the care of twins.
  • A dedicated “stork” elevator will transport mothers in labor from the hospital’s entrance directly to the fourth-floor maternity pavilion.
  • An express elevator connected directly to the Level 1 dedicated pediatric trauma center and nationally ranked pediatric emergency room services a rooftop helicopter pad.