When Lily’s situation became critical, her parents were moved to an improvised seating area in the nurses’ station at the neonatal intensive care unit (NICU) at Baptist Health’s Wolfson Children’s Hospital in Jacksonville, Florida. As doctors worked on their daughter, Rob and Courtney Barnes sat on chairs that staff had set up, had no communication with family and friends because of cell phone restrictions, and held a small piece of paper on which the doctor had drawn a heart, trying to explain their daughter’s condition—all the while experiencing the tremendously emotional and personal moment in a public, institutional setting.

Days after her birth, Lily Diane Barnes passed away from a rare congenital heart defect.

Since then, the Barnes have transformed their experience into a concept that provides other families in similar situations the comfort to cope with their infant’s condition and death in a peaceful, homelike environment within the NICU at Wolfson Children’s. Focusing on education, communication access, and homelike design, the Barnes—along with Baptist Medical Center’s in-house interior designer, Wolfson Children’s staff, and an assortment of others who donated their time and skills—designed a room where family can gather to discuss diagnoses, rest, or spend final moments with their terminal baby in private, away from the sterile atmosphere of the NICU.

Remembering Lily

Family and friends suggested a number of ideas to honor Lily, such as a scholarship fund, “but none of it really seemed to be special enough,” says Courtney Barnes. “It’s hard when somebody’s only here for a short time, and you want their life to mean something, too.”

What the Barnes wanted most was for the fund to help others and to keep the memory of Lily alive. After hearing of the Barnes’ experience and knowing about Wolfson’s renovations through contacts at Baptist Medical, Mary Harvey, principal of Agency a la Carte, a public relations agency where Courtney works, suggested creating a room based on the Butterfly Room, which is an end-of-life room at Houston Hospice in Texas. The idea met the Barnes’ objectives of honoring Lily and more, as it directly connected to their experience and also to others who will have to deal with the possible loss of an infant, and they subsequently founded the Lily Diane Barnes Fund to raise the money for Lily’s Room.

With Wolfson Children’s in the midst of renovation (which the Barnes later found out was partly to blame for their NICU experience), Baptist Health approved the transform of a 167-square-foot room marked as a consultation space located off the hallway in the NICU.

“The staff there were very receptive to the idea. The Lily’s Room concept serves a deeper purpose than merely consultations, but you can still use it for consultations,” Rob Barnes says. “It’s a comfortable space where you can review diagnoses, get news, or, for some of the new mothers, spend time with their child in a private area.”

A view into Lily’s Room

Although it was marked for consultations, the room was very cold and sterile. “There wasn’t much to it,” says Nicole Jerrell, one of Baptist Medical Center’s in-house interior designers. “The millwork was a brown and beige plastic laminate, and we ended up taking that out.” The Barnes and Jerrell selected cream-colored chair rails and crown molding with wood rosettes, along with fluted, beaded trim around built-in bookcases. The flooring is original to the room—a luxury vinyl flooring that mimics wood planks. The room is covered in gingham wallpaper in an apple green color, approximating the original color of Lily’s nursery. “It’s kind of like a baby’s room that you might have at home,” Jerrell says. The room also has homelike plaid furniture, but Courtney says it was challenging to find fabric soft enough for the purposes of the room yet sturdy enough for the traffic it would receive.

Many of the patterns and décor of Lily’s Room feature ladybugs, an element that Courtney had planned to use for Lily. The colorful bug usually associated with youthfulness and summer days can be found in the wallpaper and the tapestry on the sofa. There is also a ladybug-themed clock and shelf. “Some of the staff in Nicole’s office had heard about the ladybugs, and one of them brought a picture in of this ladybug shelf. I think they were enjoying working on something a little bit different,” Courtney explains. “I have always liked ladybugs. When I was pregnant with Lily I had found a little ladybug outfit, and I have a bracelet with Lily’s name and a ladybug.”

With the unwelcoming glow of overhead fluorescents and no window to provide natural light, the room lacked the subdued lighting that the Barnes had in mind, so an electrician donated a metal and glass lamp in the shape of a lily. Because the room did not have a window to the outdoors, the Barnes opted for the next best thing and commissioned a painting of the outdoors.

Created by Oscar Senns, an artist who works with Courtney, A View from Lily’s Room presents a window looking out into a tranquil koi pond, with, of course, lily pads and flowers. Fogle Fine Art, also a client of Agency a la Carte, donated the framing for the piece and two collages crafted with handmade paper, ribbons, and flowers, telling Lily’s story and giving thanks to the donors.

Around the time that Lily was at Wolfson Children’s, Fogle Fine Art was doing the decorating of the newly renovated NICU. Before hearing of the Barnes, co-owner Leigh Fogle, who now organizes fundraisers for the Lily Diane Barnes Fund at her gallery, found herself already emotionally struck by the NICU and its lack of privacy. “When we did the NICU, I had just had my daughter. I was in the NICU for about three minutes and I was crying so hard. I was just showing my installers, ‘OK, this goes here and that goes there,’ and it was really difficult, because unlike other patient rooms, you don’t have a room; it’s just crib, crib, crib.”

Although the design of Lily’s Room strives to recreate an atmosphere different from that of the NICU, it does not seem out of place with the rest of the floor. “It didn’t look like we just dropped in this room and ‘Wow, where’d it come from?’” Jerrell explains. “But definitely, when you walked in, you didn’t feel like you were in the hospital.”

Designing from experience

Three needs, which the Barnes felt they were left without while in the NICU, dominated the design of Lily’s Room: privacy, education, and communication.

“When things became critical and they had to take us away from Lily’s bedside, there was nowhere for us to be together,” Courtney says. “In the NICU you can only have two people at the bedside at a time. It was kind of chaotic, and there wasn’t any communication. I had just given birth and there really wasn’t anywhere for me to sit down. They also called the chaplain in and there was nowhere for him to be.”

Lily’s Room provides the needed private comfortable space for doctors and families to sit down and talk, removed from the NICU environment. The NICU is set up in pods, Jerrell explains, with between four to eight bays clustered together, separated merely by a cubicle curtain. “The opportunity to have an intimate conversation is lost, as you’re standing over all the machines and such.”

Possibly the most important aspect of Lily’s Room is that it provides a chance for families to spend final moments with a terminal baby in a homelike space. A bassinet with medical gas hookups sits next to a pullout sofa, where parents can spend the night with their babies. “Whether it’s for a few hours or a few days, new parents can be alone as if they’re taking their baby home,” Jerrell says.

At a time when family is needed most, the Barnes were left disconnected. “We were kind of on an island in the nurses’ station and didn’t really know what was going on,” Rob Barnes explains. “We couldn’t make phone calls out because we weren’t allowed to have our cell phones on. We were isolated and couldn’t let family members know that there was a problem.”

“We were surprised that they wouldn’t have thought of that since it was an intensive care unit,” Courtney adds. “Part of the problem, we found out later, was because of the renovations.” Lacking communication resources while in the NICU, the Barnes outfitted Lily’s Room with an online computer and two telephone lines to contact family and friends more quickly. The computer also serves as an educational resource to research diagnoses. The room also includes a TV with a DVD/VHS player to watch educational videos and various educational and medical books, along with a Bible donated by the Barnes’ friends who had also lost their infant daughter. “The parents are having all this medical jargon thrown at them and they don’t know what’s going on,” Courtney says. “When we met with our doctor, he drew a little diagram of the heart on a scrap piece of paper, trying to explain what was going on. Many times, this is the first you’re hearing of a problem.” With this in mind, the NICU staff decided to include a dry-erase board, which is covered by slide-away wood panels, on which doctors can visually explain diagnoses through large diagrams.

The staff has also begun using the room to teach parents the specific care requirements of babies soon to be discharged from the NICU. “People need the room when they lose their babies, but we are glad to know that it’s being used for other positive things,” Courtney says.

Deploying the concept

Leigh Fogle, who has been increasingly getting involved in healthcare art, says she is introducing the Lily’s Room concept to other facilities across the north Florida area. “I’ve been telling the administrators and the people I work with, ‘Hey, if you are getting started on renovations, try to save some space for this.’ That’s when you have to do it, at the very beginning. It’s hard to create a space after a hospital has been designed,” Fogle says.

“We’ve talked with three or four other hospitals and they all love the idea. They want to have a room, but the space is a huge issue, especially in the critical care area,” Courtney says. Although space is at a premium in critical care areas, the Barnes remain hopeful and prepared to fund more Lily’s Rooms—to keep the memory of their daughter alive in such a way that helps other families in times of deep emotion and crisis.

“If the opportunity presented itself, if there was a need we could fill, we would absolutely get involved and work hard to make it happen,” Rob adds.

“In that time of crisis, it’s definitely an intensely personal experience, and you don’t want to have that kind of personal experience in a common area,” he explains. “So to have that privacy and then to have those infant moments in a soft, homelike, noninstitutional setting is very important.” HD

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“I can never imagine what your family went through not having that room. That room is the only place we could go where no one would bother us and we could just be quiet so we could look at our baby boy one last time. To see every inch of him so we wouldn’t forget who he looked like, all his fingers and toes, it brought so much peace to us.”

— A note to Courtney Barnes from a mother who spent final moments with her son in Lily’s Room