The grand opening of Nemours Children’s Hospital on October 22^nd will unveil a transformed hospital experience made possible through a “for families, by families” philosophy. By partnering with patients’ families, Nemours aims to ensure that physicians and medical teams care for the whole child, not just a child’s illness, plus the entire family unit.

The backbone of this approach is the Family Advisory Council (FAC), twenty-five individuals representing the ‘family voice’. The group is comprised of parents whose children have chronic medical conditions; thus, each FAC member has had extensive firsthand experience as a patient-family within the pediatric health system.

Their personal feedback guided many aspects of the facility and services development, including planning, designing, and building phases.

Insight was offered by FAC members like Lori Paul, an Orlando stay-at-home mother to 8-year-old Max who received a diagnosis of cystic fibrosis just after his first birthday. “To be offered the chance to participate on the Family Advisory Council is simply the ultimate display of Nemours’ desire to foster genuine patient-family care…it’s unheard of in medicine, and amazing!”

Lori said feedback from the monthly FAC discussion sessions is now integrated, from ‘user-friendly’ signage to menu options to room lighting – children can select their preferred color! As ‘frequent-users’ of medical facilities, parents know what their kids need, which in some cases can be unexpected.

“For example, while most might expect cafeteria choices to only be ‘healthy’, my son actually needs a higher caloric intake, with high-fat, high-sodium foods because his body’s ability to absorb and process nutrients is different,” Lori explains. The diversity among the FAC members has been an educational experience for her on the needs of other patients. “Another FAC mom utilizes a wide motorized wheelchair for her daughter and shared her concern of space, from handicap parking lot accessibility and size to room functionality.”

Select members of the FAC were also trained to participate in facility interviews, including involvement in the hiring of top executive level positions. In fact, FAC influenced the employment of Roger Oxendale, who was named Hospital CEO.

Lori says she is especially looking forward to the ‘one-stop shop’ care experience that Nemours Children’s Hospital will provide for her son Max. The 62-acre, fully integrated health campus is split into two complementary halves. One side of the facility is clinic-based, housing specialty pediatric practices, while the other is an advanced 95-bed hospital inclusive of a pediatric emergency department. “We won’t have to shuffle around town (or even to another city) to different doctors’ offices because all of Max’s specialty physicians – pulmonologist, nutritionist, gastroenterologist, social worker, and other providers will be here at one centralized location.”

Embracing the power of nature, natural light fills the hospital. Outpatient surgery and surgical clinics are housed on the second floor, under the third floor neonatal and pediatric intensive care units. The fourth floor houses infusion departments and pediatric specialists, with the rehabilitation and neuro units comprising the fifth floor. Unique features throughout the Nemours facility reflect the FAC’s “for families, by families” vision.