Jardine: Surgery transforms Henry's face, health

July 11, 2010 

TURLOCK -- You remember Henry, don't you?

Henry Johnson is the little boy from Turlock who was born with Apert's syndrome. It left him with fingers that were fused together and his skull already hardened. He's had several surgeries to separate the digits and to address the craniofacial issues.

He's the Henry of Henry's March, a walking- running event in Turlock each spring that has generated more than $70,000 in just three years for the Children's Craniofacial Association.

He's the little boy who, two years ago, walked into kindergarten at Denair Elementary and met Derek Coleman. Derek had the same scars on his head for the same reason: a prematurely hardened skull. Derek, too, had endured operations and found someone who has "the same piece of skin on our heads," as he put it when he first described Henry to his mother. The boys have been inseparable pals ever since.

Throughout all of this, Henry and his parents, Rachel and T.J. Johnson, knew more operations loomed. None, however, would be more radical and important than the one he had last month. They flew to Dallas, where surgeons completely transformed his facial structure.

Henry's face always has been concave, meaning his nose and upper teeth were recessed. His chin jutted out well beyond his nose. It caused physical problems, Mom said. "When he breathed, Henry always sounded like an English bulldog," Rachel Johnson said.

He constantly fought ear infections that hampered his hearing. He had sleep apnea, which means his breathing would pause while he slept. It can be a dangerous and even deadly condition.

So, this surgery was far more than cosmetic. It was vital.

The Johnsons, though, knew it would be a harsh and painful operation for Henry, who turned 8 on June 15, the day before his surgery. While he's a child with an incredible ability to deal with pain, he overcame more than anyone could imagine.

"I had a good 20-minute breakdown before we left (Turlock)," Rachel Johnson said. "I was sobbing. I was so scared of putting him through it -- the pain, changing his looks. It could have been disfiguring in the opposite sort of way. T.J. told me, 'Get it out of your system now, because Henry's going to need you to be strong.' "

In Dallas, the surgeons spent nearly six hours separating the bones in Henry's face, from his cheek to his ear and down to his jaws, so they could, for lack of a better term, pull his face outward.

Then they attached what Henry calls "the purple thing." It's a brace mounted by pins into each side of his head and into the roof of his mouth. For the first few weeks after the surgery, his parents had to adjust the brace every day to extend his face. They're finished with that part now, and waiting for the bones to grow together to make the changes permanent.

"I think he looks good," said big sister Lauryn, who will be an eighth-grader at Denair Elementary. "He looks done. I miss his old face. But the new one looks good, too."

Henry, due to be a second-grader at Denair Elementary, will wear the brace into August and then return to Dallas to have it removed.

The result is a completely different- looking Henry. His nose and cheek bones are prominent. The sleep apnea is gone.

"He sleeps until 7 a.m.," Rachel Johnson said. He breathes normally. "And he's quit snoring," she added.

Before the surgery, his parents figured he was a bit delayed intellectually. Now, they're rethinking that. The ear infections are gone, and he hears them now.

"I've noticed a change in his personality," Mom said. "I don't know if its because he can hear more, but he's communicating better."

His speech is clearer, even with the head brace anchored inside his mouth.

Henry's looks have changed so much that when shown a photo of him after the surgery, buddy Derek didn't believe it was his friend. And when they got together back in Turlock, "Derek was very nervous, very apprehensive at first," Rachel Johnson said. "He kept his distance."

It wasn't until he saw Henry's hands -- Henry's fingers still await straightening -- that Derek became convinced the boy behind the new face was, indeed, his best friend. "Henry missed him so much," she said. "They got to talking, and everything was fine."

While Henry was in the hospital, Derek got a pet turtle. He named it Henry Johnson. Meanwhile, the nurses gave Henry a teddy bear; he named it Derek. Neither knew what the other had done until Henry came home.

Even wearing the "purple thing" headgear, Henry is an active and exuberant little boy. But he's growing up. Once a nonstop bundle of energy, he's calmed down, perhaps a result of having to make sure he doesn't bump into anything with his headgear.

Once a bit of a ham, he can be shy at times. After years of being the area's face of craniofacial awareness -- you'd think everyone in Turlock knows Henry -- he now seems to be embarrassed by the attention. He's adjusting to his new look, and growing up in the process.

So, do you remember Henry? You might recall his story, but you wouldn't recognize him otherwise.

He's a whole new kid.

Jeff Jardine's column appears Sundays, Tuesdays and Thursdays in Local News. He can be reached at 578-2383 or jjardine@modbee.com.

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