Growing Together

by Christina Echegaray

The silver, four-socket electric outlet inside Room 7739 is a seemingly simple amenity people use every day to plug in cell phone chargers, computers and other gadgetry.

For parents, such as Kara Adams, it’s more than a charging station or electricity hub. It’s a little peace of mind. It’s a piece of home. It allows a weary parent fewer trips outside the hospital room, away from a healing child, to find a place to recharge a cell phone for calling friends and relatives.

For families, details are important. Sometimes they spend days, weeks and even months inside the hospital room. Essentially, the space becomes their home, and the Monroe Carell Jr. Children’s Hospital at Vanderbilt strives to make it feel that way.

When Vanderbilt began planning to add 33 beds to Children’s Hospital in a new five-story expansion, families’ voices mattered.

Input was received from the Family Advisory Council (FAC) as well as doctors, nurses and the hospital’s young patients. Together they helped grow the hospital, and the new 30,000-square-foot addition formally opened in May, creating more acute care, surgical and neonatal intensive care beds.

“You’re in the room day in and day out, and even the little details, whatever they are, make a huge difference for families,” said Adams, chair of the Family Advisory Council. “It’s exciting the advisory council was able have some input – even with the small things such as an electrical outlet.”

Beyond having more accessible electric sockets, parents suggested for every new room: more comfortable sleeper couches, more shelf and storage space, bathrooms, repositioning the family resting area and relocating the television in a central part of the room.

The Family Advisory Council was integral in the initial construction and opening of the freestanding Children’s Hospital in 2004. Members weighed in on building designs and planning.

When families and children proposed a movie theater, the hospital listened. They were involved in selecting themed decorations for each of the eight floors: trees, wildlife, flowers, fish, etc. They were instrumental in creating family quiet rooms – windowed areas of respite with no television or phones. Families have experiences and unique perspectives that are invaluable to the mission to care for all children, said Janet Cross, director of Patient and Family-Centered Care at Children’s Hospital.

“Their observations, insights and ideas are powerful tools for enhancing quality. When families work side-by-side with professionals to design and implement programs, both are enriched,” said Cross.

“As a group the FAC has a synergy that works together to develop new ideas, to provide constructive feedback to programs and practices and to share their stories with our communities.”

Since Children’s Hospital opened, patient occupancy at the hospital has remained consistently high. Between 2005 and 2011, patient admissions grew by about 24 percent, while emergency room visits grew by as much as 42 percent.

The new space positions the hospital with necessary additional capacity to meet the growing demand for the specialty and sub-specialty services offered by physicians and staff. Children’s Hospital is now licensed for 271 beds and has 650,000 square feet.

“The Monroe Carell Jr. Children’s Hospital at Vanderbilt remains this region’s only resource for many children suffering life-threatening diseases. As such, Vanderbilt is furthering its commitment to our most vulnerable patients with this investment in additional hospital space, and by providing support for research into new therapies to treat childhood diseases,” said Jeff Balser, M.D., Ph.D., vice chancellor for Health Affairs and dean of the Vanderbilt University School of Medicine.

In addition to the hospital’s expansion, more than $20 million in program enhancements are targeted for fundamental research into treatment and prevention of broad areas of childhood disease prevalent throughout Tennessee and the nation — including prematurity, childhood cancer, childhood heart disease and autism.

A portion of the new addition also was created to accommodate more premature babies transferred from outlying community hospitals to Children’s Hospital’s Level III Neonatal Intensive Care Unit, a service providing the region’s most sophisticated level of care.

“This is a proud time for the  Monroe Carell Jr. Children’s Hospital at Vanderbilt,” said Luke Gregory, chief executive officer of Children’s Hospital.  “We are excited about the completion of this phase of growth, which will meet the increasing requirements of the community, as well as allow us to introduce new technologies and services to better serve children across the country.”

Over the years, children’s health care services at Vanderbilt have grown and evolved. While Vanderbilt treated children in the early half of the 20th century, it wasn’t until 1970 that the institution had centers focused solely on pediatric health care.  At that time, David Karzon, M.D., then chief of Pediatrics, created the concept of having a children’s hospital within the main hospital, and he helped found the Children’s Regional Medical Center. The Junior League of Nashville merged its Home for Crippled Children into the new Center.

In 1980, child patients were moved to three floors, dedicated to pediatric health care, within the newly opened Vanderbilt University Hospital.  Demand for specialized care for young patients grew, and in 2000, Vanderbilt with the community’s support broke ground on today’s freestanding facility, the Monroe Carell Jr. Children’s Hospital at Vanderbilt.

Children’s Hospital’s reputation already reaches far and wide.

Kara and Jason Adams left their home in Hawaii a little over eight years ago because of Children’s Hospital’s reputation for specialty services. They sought care here for their unborn son, Kael, who was diagnosed with a rare, complex congenital heart disorder in utero. Jason, who is in the military, was stationed in Hawaii at the time. None of the hospitals or doctors on the islands could provide the care their son would need.

The couple decided Nashville, where they had relatives, was the best place to be. That meant sacrificing, and Jason taking certain deployment assignments so the family wouldn’t have to relocate.

Kael had his first open-heart surgery at 8 days old, and was among the first babies to be an inpatient in the Children’s Hospital Neonatal Intensive Care Unit when the freestanding Children’s Hospital opened in 2004. He had a second surgery at 5 months.

“I knew we needed to stay here because they saved my son’s life. We decided this was the best place for Kael,” she said.

Kael, who now lives in Mt. Juliet, Tenn., has had 14 procedures since birth. The 8-year-old second-grader has

Taussig-Bing Anomaly, a congenital heart disease that causes a rare malformation of the heart. Both the pulmonary artery and aorta connect to the right ventricle, and a large hole exists below the pulmonary artery.

The Adams know the layout of the rooms at Children’s Hospital well. In a tour of the new inpatient rooms, Kara Adams absorbed each new detail: the electric socket, a fold-out sleeper couch, flat-screen television, spacious bathroom and more storage space.

Kael, whose name means “mighty warrior,” asks, “Is this going to be my room?”

“Not this time Doodlebug,” said Kara Adams.

At the heart of the new space is a family-friendly, sunlit atrium. Children’s Hospital’s signature child-friendly art and themes of nature continue throughout each floor. Raccoon-shaped feet traverse the brightly colored tile flooring in one area while fall leaf patterns dot the space of another.

For the Adams, there is always the weight of another surgery, another emergency visit and possibly another inpatient stay right around the corner. But they always find comfort in the care they receive. Kael finds happiness in the time he gets to spend in the hospital playrooms.

“Not only are we receiving world-class health care with world-class doctors, but the relationships we have built, my son has built, within these walls are very special,” Adams said.

She was thrilled to see the council’s input mattered, a reflection of those sacred relationships.

“The family advisory council is a voice for all families, and that is a huge responsibility that we take very seriously,” she said. “When we are asked to be involved in projects, we want to have a positive voice with integrity. We don’t want to change Vanderbilt. We want to make an already great place even better.”

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What is the Family Advisory Council (FAC)?

The Council is a group of parents whose children have current experiences with Children’s Hospital or its outpatient clinics. Often, these parents become experts in children’s health care because their child has had extensive treatments or spent time at the hospital. Hospital staff also sits on the Council. The group provides family
perspectives in the development and implementation of programs, policies and practice standards to improve quality of patient and family-centered care.

Go to childrenshospital.vanderbilt.org/fac to learn more about the Family Advisory Council.