The day after his eighth birthday, Henry Johnson was in surgery.  This was not just the latest of a lifetime of reconstructive facial surgery, but a surgery that would give him a whole new face.

“Henry’s face is totally different now, it really doesn’t look the same,” said Henry’s mom, Rachel Johnson.

Henry was born with Apert syndrome, which gave him a distinctly different face. Most children with Apert syndrome have a recessed middle face, with smaller than average features. As Henry gets older, his face does not grow as quickly as the rest of his body. Because of his smaller nasal cavity, Henry was starting to get sleep apnea, which could stop his breathing during sleep.

The surgery that Henry underwent in June is called mid-face advancement surgery. He had cuts made in the bone in his face, and had a RED device attached. The device works similarly to braces, it is adjusted regularly and it pulls the facial bones forward. He and his family had to travel all the way to Dallas, Texas for the surgery, something they have done at least once a year since Henry’s birth.

While most kids spent their summer swimming and going to camp, Henry spent his indoors on a liquid diet. He had to wear the RED device for seven weeks, and he had to be very careful not to bump in to anything.

“We considered having the surgery done during school, so the other kids could see the gradual change in his face. But there was a chance that he would bump it or snag it and it would be painful or uncomfortable. So we did it in summer and I had to keep him home,” Rachel Johnson said.

The end result was a more distinctive profile and more protruding facial features. Henry can wear glasses now, something that was difficult when the bridge of his nose was more recessed. Another big difference his family noticed was his post-surgery face helps him blend better in crowds.

“He’s well adjusted in Turlock because everyone knows him. But when we go out of town people stare, take a second glance at him, and ask questions. We don’t notice that as much after his surgery,” Rachel Johnson said.

The day he got his device removed, Henry went to a Dallas mall with his family. They were in the Lego store when his mom first noticed the change in the way other people perceive Henry.  There were 10 other boys playing with the Legos right next to Henry, and Rachel watched their reaction to him.

“Those kids were standing shoulder to shoulder with him and didn’t give him a second glance,” she said. 

Rachel Johnson wants all kids with Apert syndrome and other head and face differences to experience the same level of acceptance that Henry receives. She and her family started Henry’s March, a 5K run that benefits the Children’s Craniofacial Association. Henry’s March 2011 will be held on March 6, and preregistration is open until March 2.