Siskin Children’s Institute, an “umbrella of safety” for Klaire Robison and her family. Learn how this 4-year-old girl has overcome battle after battle to be where she is today.
After spending only half an hour with 4-year-old Klaire Robison in Classroom 2 at the Early Learning Center-Downtown, it’s almost impossible to imagine that at one point in her life, not that long ago, she was restricted to a bed in the neonatal intensive care unit (NICU), relying completely on nurses and technology for everyday functioning.
By contrast, when anyone first meets Klaire today, he or she will be greeted with two big brown eyes, from which confidence and life radiate. There’s a high likelihood she will be wearing a fluffy bow in her curled brown hair, light pink glasses wrapped around her head, and, depending on the day, a bright orange T-shirt, which pockets a small recording device being used in an Institute study. The device, a language assessment tool called LENA Pro, tracks Klaire’s utterances and verbalizations so that her teachers, therapists and family can help her improve in her language skills.
When Klaire’s teachers were asked to describe Klaire's personality, they said two words, practically in unison: “smart” and “stubborn,” the perfect qualities needed to overcome the numerous battles she has had to face during the course of her short life.
Born with Down syndrome and esophageal atresia (EA), a rare birth defect in which a baby is born without part of her esophagus, Klaire spent the first six months of her life in the NICU, surrounded by nurses and therapists. Klaire was hooked up to ventilators and a feeding pump to help perform the duty of a properly-functioning esophagus – to deliver food to the stomach for digestion. She never experienced the feeling of hunger like other children her age and had no freedom of movement.
When she was four months old, the doctors unsuccessfully attempted to fix her EA, and the Robison family almost lost their only daughter. An immediate follow-up surgery also failed, and she was given 24 hours to live. “We felt like we had no other options at that time,” explained Kelley Robison, Klaire’s mother. A doctor then gave Klaire what Kelley referred to as “an extra set of lips” through a risky procedure but one that Kelley believed was necessary to try. Klaire’s esophagus was repositioned and placed on the side of her neck.
With her new set of “lips,” Klaire was ready to go home for the first time. Almost immediately after Klaire got home from the hospital, the Robisons began receiving family training and services through Tennessee’s Early Intervention System (TEIS) and the Institute’s Home- and Community-Based Early Intervention program. Institute early interventionists made home visits and helped the family get into a normal routine. They concentrated on developing Klaire’s independence through communication and mobility. Klaire learned to communicate her needs and wants through sign language rather than yelling, her only method of communication up to that point.
While the family, including older brother Parker, was busy getting to know Klaire at home and learning how to help Klaire through the guidance of her early interventionists, Kelley was exploring options for helping Klaire learn to eat and swallow. After two years of research, the Robisons packed their bags yet again and traveled to Vanderbilt in Nashville, Tenn. for another procedure that, after only a week, failed. Doctors took a piece of Klaire’s colon and connected it to her esophagus, but the colon graft lost its blood supply. Klaire was back to square one and headed home in the same condition as when she arrived at the hospital.
After nearly four years of failed surgeries, in the spring of 2011, Klaire finally caught a break, and her EA was corrected. Returning to Vanderbilt, the family hoped for the best, for a chance of normalcy in their daughter’s life. Doctors pulled Klaire’s stomach up to her chest, thus attaching her stomach to her esophagus. “Now,” Kelley describes with amazement, “the child eats like a champ! It’s unbelievable. She can eat anything she wants.” Interestingly, Klaire’s favorite foods are those with extreme and lasting flavor, such as salsa.
Today, Klaire is an integral part of Classroom 2 at the Early Learning Center-Downtown and is showing an interest in beginning to talk. This development is being encouraged by her teachers, therapists, family and Institute researchers using the data collected from her participation in the study using LENA Pro. According to Allison Thompson, Klaire’s teacher, such progress is a result of a combination of factors, including the classroom environment of engagement and interaction among teachers, therapists and peers.
“Besides developmental growth, Siskin Children’s Institute has helped Klaire socially,” said Kelley. “She spent so much of her early life with adults and had a hard time connecting with kids her age. Being here [the Institute] has helped her learn to play independently in a room with other kids her age or to play side-by-side with them.”
“It’s been a crazy, crazy ride,” said Kelley. “I still can’t believe where we are now. A huge advantage of being here [the Institute] is that everyone is always one step ahead of Klaire and constantly prepared to challenge her with the next goal. I just don’t want her to leave this umbrella of safety!”