Sonny Daniel has had a busy summer. Between traveling, camp, and time with family and friends, this 4-year-old has constantly been on the go β something his parents, Kellie and Josh, are incredibly grateful for. Brian Labow , Dr. Amir Taghinia , and others in the Craniofacial Program. Sonny having Apert syndrome came as a surprise to Kellie and Josh.
She recalls a whirlwind of emotions in the moments after Sunny arrived. I noticed all the digits were there, but they were fused together. Then the team whisked our boy away for further examination and eventually to the NICU. In addition to fused fingers and toes, babies with Apert syndrome often exhibit: β a long skull and high, prominent forehead β an underdeveloped upper jaw β prominent eyes that appear to be bulging out and might be spaced widely apart β a small nose.
Sonny was diagnosed with Apert syndrome within 24 hours of his birth while still in the NICU, with a confirmed diagnosis coming a couple of months later. Kellie and Josh went straight to work looking for ways to help their son. Sonny underwent skull release surgery in March near home in Charlotte, North Carolina. In an effort to stay close to home and to the care teams they had grown to know, they first consulted two centers in North Carolina.
Their reasoning, she explains, is that both facilities believed Sonny would fare better with fused middle and ring fingers acting as one digit versus creating two thinner and potentially weaker fingers. They reached out to the Craniofacial Program and heard back from the team within days. Separating them β through a procedure called syndactyly separation β would take a staged approach, meaning multiple surgeries. So, to avoid pulling or taxing his skin too much at one time, we will limit ourselves to only one side in each operation.
Labow and Dr. Labow says. While the idea of having completely free hands excites Kellie and Josh, Sonny is pretty pleased with his own progress so far. Our daughter Maisie is 4 years old. She loves riding her bike, baking, jumping on the trampoline, and keeping up Jack is almost 2 years old and loves to swim, chase his older sister around the house, and just bring lots Traditional treatment for children with craniosynostosis β a condition in which the bones of the skull grow together too early in Sonny comes to Boston Children's Hospital from North Carolina for syndactyly separation surgery β a procedure that separates his fingers that are fused together as a result of Apert syndrome.
