Shaping a New Look
3rd Grader Undergoes Transformative Surgery to Allow Normal Bone Growth
Ty Arroyo wasn’t unhappy with the way he looked before he had major surgery. But now the 9-year-old says he likes his appearance and appreciates it when people tell him, "You look great!"
The boy was born with Crouzon syndrome, a rare genetic disorder that causes connections between the skull and facial bones to close before the brain is fully formed. This early fusion, called craniosynostosis, interferes with normal brain and skull growth and affects the shape of the head. Without treatment, the condition can lead to serious complications including blindness, breathing problems and pressure on the brain.
Ty had a few surgeries between ages 1 and 5, with disappointing results. His parents, Jose and Courteney Arroyo of Tinley Park, later looked for a new plastic surgeon.
In early 2011, Courteney Arroyo, a hairstylist, turned to her nurse clients for advice. "They told me to see Dr. Reid at the University of Chicago," she said. Russell Reid, MD, PhD, assistant professor of surgery and an expert in pediatric craniofacial surgery, had just formed the Craniofacial Anomalies Multidisciplinary Program (CAMP) at the University of Chicago Medicine Comer Children’s Hospital. The CAMP team includes plastic and reconstructive surgeons, neurosurgeons, neuroradiologists and a geneticist. They work closely with other specialists such as orthodontists, ophthalmologists, otolaryngologists, sleep specialists and speech therapists to offer consolidated, comprehensive care for their patients.
"Ty had the characteristic look of a child with Crouzon syndrome," Reid said. "His eyes were prominent while the middle of his face was sunken in. He also had underdevelopment of his upper jaw, causing mild breathing difficulties and dental problems." Like most children with Crouzon, Ty did not have any developmental delays.
Surgery to correct the deformities included cutting the bones around Ty’s eyes and in the middle of his face and placing pins into his skull for stabilization, Reid explained. The pins were attached by wires to an "external halo distraction device," which Ty wore for several months afterward. Courteney and Jose had a crucial post-surgical role: turning the pins 1 millimeter each day for three weeks. This slowly moved Ty’s facial bones forward, giving more space for his eyes, bringing his teeth forward, allowing more room for his tongue and opening his airway.
"The process is an elegant and stable way to make new bone," Reid said. "It’s true tissue engineering because the patient forms completely new bone after fractured ends are pulled apart."
Not wanting to interfere with school, Reid and the family agreed on May 18 for the surgery. The operation took more than 10 hours and involved a team of surgeons, pediatric anesthesiologists and specialized nurses.
"Ty was an exemplary patient," Reid said. "I talked to him at length before the surgery and he understood what was going to be done and the benefits of the operation and the process. He was motivated and affable."
Ty was funny, too. As soon as he could talk after surgery, he looked at Reid and said, "Hey doc, when can I get this thing off?"
His parents had no trouble turning the pins daily. Ty never complained, saying it didn’t hurt. He was more concerned about what his friends would think when they saw him wearing the halo device. "They treated him the same as always and told him that he was the bravest kid they knew," his mom said. "From that point on, Ty felt better and became more accepting of what was going on."
Ty wore the halo for two months: three weeks for turning the pins and another four to allow the new bone growth to solidify. Reid removed the device July 20, leaving time for Ty to ride his bike, swim and try out for soccer before starting third grade.
Courteney worried she would miss how her son looked before the surgery. "But now I see this is the way he was meant to be," she said. "He still looks like Ty, but he is a better Ty."