Chloe Lang is not your average young woman. When she was 10, Chloe was the lead character on the wildly popular children’s television show “LazyTown.” The show, which was filmed in Iceland and shown around the world, revolved around Chloe’s character, Stephanie, who comes to live with her uncle in LazyTown and spends her time trying to get her out-of-shape neighbors to live a more active lifestyle. Today, at 17, Chloe is still acting and serves as a patient advocate for Connecticut Children’s new Infusion Center – a facility that manages to distract and delight while providing life-changing treatment for infusion patients.
A Patient’s Perspective on Infusion Treatment
Chloe, who has been getting regular infusions at Connecticut Children’s for the past five years, was a guest speaker at the ribbon-cutting ceremony held April 25 at the new state-of-the-art facility, located at 10 Birdseye Road in Farmington. “I’m excited to get my first infusion here,” Chloe told donors, patient families, board members and area dignitaries in attendance. “I want to bring all my friends here to see it.”
As part of the Center’s new opening, Chloe made a video about the infusion process to help new patients better understand what it’s like from a patient’s perspective—because she would know.
The whole time she was filming “LazyTown,” Chloe was struggling with ulcerative colitis, a debilitating form of inflammatory bowel disease.
“It started out as really bad stomachaches,” Chloe says, “to the point where I couldn’t stand or walk. Sometimes I would be in the middle of a scene and I would just say, ‘Stop; I can’t do this anymore,’ and I would sit down and curl up. The director would say, ‘What are you doing? We have a budget, we have to finish on time. Get up and finish your scene.’ It went on like that for awhile until I finished that season and I went home and started going to all these doctors and trying to figure it out.”
“She had two ER visits a week apart,” her mother, Tina, says, “and at the second ER visit she actually collapsed. She was down to 79 pounds. Because of the trauma that happened to her body, her hair was falling out in clumps—which was itself traumatic.”
Finally, Chloe was referred to Connecticut Children’s, where Jeffrey Hyams, MD, the Director of the Center for Pediatric Inflammatory Bowel Disease and the holder of The Mandell-Braunstein Family Endowed Chair for Pediatric Inflammatory Bowel Disease, diagnosed her with ulcerative colitis and began the process of finding the most effective treatment. That turned out to be a biologic drug that has turned her life around. But it has to be administered slowly through an IV over the course of an hour, and the treatment needs to be repeated every few weeks.
Over the past five years, that had been happening in a tiny, cramped utilitarian space at Connecticut Children’s Hartford campus, where patients were treated in a 343-square-foot room equipped with six infusion chairs, a space that opened more than 20 years ago with 20 percent of the patient volume.
“The old infusion center was small, crowded and noisy—sensory overload,” said Dr. Hyams. “What we wanted to do with this space is the exact opposite.”
Connecticut Children’s donors came to the rescue, generously funding the construction of a world-class Infusion Center, which is as whimsical as it is functional.
Welcome to Wonderland
The reception area alone is eye-popping to look at, with rainforest imagery on some walls, fireflies on others, a blue pool-like recess in the ceiling surrounded by layer upon layer of green cut-outs, like the shores of a forest pond. There’s a bas-relief birch forest along one wall, dew-drop pendant lights, and everywhere swooping lines and bold shapes. There is hardly a straight line or flat surface anywhere. Everything is designed to amuse and engage patients; nothing remotely resembles a medical facility.
Then there is the treatment area, a large space with a circular central desk and treatment rooms around the perimeter. Your eyes are likely to be drawn to the huge, colorful acrylic tree in the center of the room—a tree that glows from within. There are three styles of patient rooms that the kids will get to choose from. One is a tent motif, with kid-sized passages between rooms, triangular doorways and Coleman-lantern-style hanging lights. The second is a cabin style,with wood-textured walls, a sliding barn door, and blackout shades and a bed for patients needing lengthy infusions. And the third looks like an Airstream trailer. Each offers a different level of sociability, so patients can choose to interact with other patients or enjoy privacy.
“We really wanted to create a space that varied the patients’ experience, so that they can discover something new with every visit, and even look forward to their next appointment,” said Karri May, the Manager of Planning, Design and Construction. “There’s such attention to detail in the smallest things, I have no doubt patients and their families will notice a different element of adventure with every visit.”
To make the space even more special, each treatment room has a video screen, on which the kids can explore a virtual world. Each child creates a Pathfinder—a character that represents the child in the game. That character moves through several landscapes collecting colored fireflies as it goes, putting each color of firefly into a different jar. Once a jar is full, the child can remove the cover and release that color of firefly. As the fireflies fly off, the color of the acrylic tree changes to match their color, giving children a measure of control over their infusion environment.
Thanks to the world-class treatment she gets at Connecticut Children’s, Chloe is now thriving. She is a senior in high school, pursuing a very active career singing, dancing and acting. Her music videos are gaining traction on YouTube, she’s landing acting jobs in New York City and this fall she will attend Pace University, where she plans to study entertainment management.
For other Connecticut Children’s patients requiring infusion therapy, the adventure at the new Center began April 30. Please visit our photo gallery from the ribbon-cutting ceremony on April 25, 2019.