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Daphne Thronesbery Totten was born at St. Vincent’s hospital in Jacksonville to a loving and welcoming mother Kendra. Within hours of her birth, Daphne was diagnosed with a cleft palate, and twenty-four hours later, her mother was told that Daphne had Pierre Robin Syndrome, a birth defect that occurs in 1 out of every 8000 births. While in utero, Daphne’s jaw had fused together too soon. This caused her to have an underdeveloped jaw and a cleft palate…a situation made more complex because Daphne’s small jaw was unable to support her tongue and, when she was laid on her back, her tongue would fall back blocking her airway. With her airway obstructed, she was having difficulty breathing and she was turning blue.
For many years, the traditional treatment for this problem was a tracheotomy and a feeding tube. Fortunately for Daphne, Dr. Saswata Roy, Wolfson’s craniofacial surgeon, has expertise with a specialized surgical intervention, Distraction Osteogenesis, which can create an adequate airway. In lay terms this can be described as making an incision into the jaw close to the ear and inserting small screw-like devices into the jaw. Once the screws were in place, they were turned gradually to promote jaw growth. This task was performed by Daphne’s mother because of Wolfson’s philosophy known as Family Centered Care. This allows the family to remain as involved in their child’s recovery as much as possible. “It was as if I had a job to do to get my baby better,” reports Kendra. “I was at her bedside 16-18 hours a day, for 14 days, and watched with wonder as my baby’s jaw grew. It was amazing. On my birthday, Daphne finally was released from Wolfson and we returned home!”
Daphne is now a 15-month old who steals the hearts of all who meet her. With her big blue eyes and rosy cheeks you would never know the struggle she went through. “I owe my daughter’s life to Dr. Roy and the staff at Wolfson. They showed me God working in every person,” remembers Kendra Thronesbery Totten.
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