Nemours Children's Hospital built by families

Before the first patient walked through the doors of the Nemours Children’s Hospital in Orlando, which opened Monday, Oct. 22, the beds had already been laid in to test for comfort.

The cribs had been climbed into to see if moms can squeeze in with their little ones, and the tables had been sat at while by parents figuring out if their whole family might be able to have dinner together, even if one has to stay in bed.

In the six-year journey to open Nemours Children’s Hospital, it hasn’t just been the architects and doctors spending countless hours making design decisions. The families whose children might one day have to stay there got to make decisions too.

More than 40 parents are members of the Family Advisory Council, which has committees deciding on the patient rooms’ features and layout, brainstorming ways to make the process easier for families and even interviewing the doctors and nurses who will work there.

“They are family-centered care from the ground up,” said Maitland mom Lynda Griffin, who is co-chair of the Family Advisory Council. “They integrated everything we said … we were being heard.”

Family-centered care is at the heart of the organization’s philosophy. They want to include parents in the care of their children, which to them means listening to their concerns, asking for their opinions and making sure parents always know what’s going on with their child’s care.

“They’re an embedded part of what we do,” said Dr. Michael Campbell, director of patient and family-centered care at Nemours. “They’re the real experts and they offer a unique perspective.”

“We live it; we’re part of every treatment they do; we’re a part of every doctors’ visit,” Lynda said. “I’m the one who knows my kid.”

Lynda’s 6-year-old son Cian has cystic fibrosis, which is a chronic lung disease. His many trips to the emergency room and stays in the hospital after surgery have given their family quite a bit of experience to draw from when giving feedback on the building of the new hospital. Lynda, without hesitation, has climbed in beds and cribs to test them out for the committee, because she knows when a child is sick, nothing will keep a mom from hopping right in there with them. A week stay in a hospital without her heading to her own bed once isn’t unheard of. Now, there will be a comfortable place to sleep, while before that wasn’t the case.

“We’ve slept in a chair for a week,” she said.

Each of the 95 rooms in the 630,000-square-foot, $397 million hospital will be private and much larger than average, because a whole family along with medical care professionals are intended to fit in the room with the patient. There’s a long counter to use for personal items, a refrigerator for their food and a table that can fit a family for dinner. Giant windows let in natural light and welcome distractions for kids and parents.

Cian’s brother Patrick, 9, said that his favorite part of the new hospital is that he’ll have room to be with his little brother. Cian’s father, Patrick Griffin, said that for his previous hospital stays, their family felt fractured — Lynda comforting Cian by staying overnight, while Patrick was left with their older son.

“Now we can stay and be a family unit,” the elder Patrick said.

Not only were parents able to give insight into what would make their whole family more comfortable in the hospital rooms, they were also given the opportunity to interview the doctors and nurses hired. Lynda has conducted more than 100 interviews and still does orientations for all employees, from security guards to heads of surgery, sharing what it’s like for a family of a chronically sick child. One of her favorite questions is asking why a person got into health care.

“A lot of times it was that emotional connection that got us,” she said.

Many parents ask questions to help them figure out if a doctor will be part of the family’s team and not be an outsider making decisions without them. And Nemours takes their suggestions seriously — applicants were not hired if the parents didn’t feel like they embodied the family-centered care philosophy. It’s a relief for parents to have doctors they truly trust and like taking care of their children, Lynda said.

Nemours Children’s Hospital, located in Lake Nona Medical City, opened Oct. 22. The 630,00-square-foot, $397 million hospital includes a clinic, emergency department and education and research facilities. Visit nemours.org for more information.

“It makes the connection between physicians and families that much stronger,” Campbell said.

In the end it’s made for more open relationships, and parents really feeling an ownership over a hospital they’ve helped build themselves. Lynda will never forget the day she was driving down the road, and for the first time, she saw Nemours Children’s Hospital finished, standing on the horizon.

“It was an overwhelming feeling of comfort and joy and excitement.”