Rhett Harmon was only a few months old when his parents noticed his head looked long and narrow, instead of round and chubby.
He was diagnosed with craniosynostosis, a birth defect in which the bones in a baby’s skull join together too early. As the baby’s brain grows, pressure builds up, causing developmental problems and a skull that looks misshapen.
Rhett’s parents, Cassie and Layne Harmon, live four hours away in Covington, Va. They researched centers across the state to treat it before settling on Cleft and Craniofacial Center at CHKD. Dr. Jesus Inciong, a pediatric plastic surgeon at CHKD, told the Harmons Rhett was the perfect age to have the corrective procedure done, and surgery was set for March.
But then came COVID-19. Four days before his surgery, the governor told hospitals to stop elective surgeries.
Rhett would have to wait.
“We had already packed our bags,” remembers Cassie Harmon.
She knew the procedure was best done before Rhett turned 1 in November. Would the pandemic restrictions be over by then? How long before his surgery could be rescheduled? Would it get done in time? Cassie gathered strength from the support group, Cranio Care Bears.
Once the governor lifted the ban on elective surgeries, the Craniofacial Center rescheduled Rhett’s surgery for June 5. Because of COVID-19 restrictions at CHKD, only Cassie and Layne were allowed into the room.
They arrived at 5:45 a.m., and were greeted with a crew of Rhett’s grandparents, aunts, uncles, cousins, and siblings. Their relatives hadn’t told them they were coming, but spent four days on the lawn at CHKD from 7 a.m. until 7 p.m., dressed in purple leis and “Cranio” T-shirts that said “Rhett Strong.”
“They were my village, my tribe,” Cassie said. “I was so comforted knowing they were there. They stayed there doing vigil through the weekend, and until he was discharged the following Monday.
“It was the longest day of my life and yet at the same time, it went so quickly.”
Rhett recovered just in time to celebrate July’s National Cleft and Craniofacial Awareness and Prevention Month. About 1 in 700 children in the U.S. are born with cleft and craniofacial differences.
The craniofacial team at CHKD sees 800 patients a year and performs 200 surgical procedures for patients with a cleft or craniofacial abnormality. The center is accredited by the American Cleft Palate-Craniofacial Association, which requires a multi-disciplinary approach, including ear, nose, and throat surgeons, neurosurgeons, plastic surgeons, counselors, speech therapists, and dental and orthodontic specialists to care for patients with cleft and craniofacial conditions.
In August, the craniofacial team will be welcoming an oral and maxillofacial surgeon to its care team to treat our cleft and craniofacial patient population, and other children with disorders of the head, neck, face, and jaw. Rhett’s surgery went smoothly, and he bounced back quickly. “Now his head is big and beautiful and round,” Cassie said, “And you’d never know he had anything done.”
