For the Love of Henry

Family's goal of normalcy for son leads to fund-raiser

By JEFF JARDINE
jjardine@modbee.com

last updated: January 27, 2008 03:36:20 AM

TURLOCK -- Henry Johnson loves to strum his guitar. When he has fresh batteries, the 5-year-old Turlock boy makes joyful noises on his electronic keyboard. And he does a nifty Ringo Starr impression, too.

"We got him a little drum kit, which we keep out in the garage," said T.J. Johnson, Henry's father. "I'm getting ready to leave for work at 20 minutes to 6 (on Friday morning), and he's already out there banging away and having the time of his life."

Yes, Henry possesses some very active fingers -- now. That wasn't the case when he came into the world in June 2002.

Afflicted with Apert syndrome, his fingers were fused together when he was born. His hands looked like mittens. Same with his feet. His skull already had hardened and his head was "huge," said mom Rachel, who experienced an excruciating natural birth.

Apert syndrome turns up in one of about 160,000 to 200,000 babies, according to the Children's Craniofacial Association.

Shortly after he was born at Modesto's Memorial Medical Center, Henry's parents knew he would be destined for surgery after surgery to ultimately repair or at least revise his drastic and physically limiting imperfections.

He's had six major surgeries and numerous other medical procedures so far, with several more to go. Perhaps through the naiveté of his youth, he keeps bouncing back undeterred.

"That kid is resilient," said his dad, who manages a Foster Farms turkey processing plant in Turlock. "For a little peek into his character, two times in his young life he's had casts on both his hands and feet at the same time. In our old house, we had stairs and he'd try climbing them. Here he was, trying to get up those stairs, with the casts, and sweating. Talk about adapting. But that's all he can do, is to adapt."

Henry, at 5, has the cognitive skills of a 3-year-old, his mom said. He attends special education kindergarten at Brown Elementary School in Turlock. He talks when he wants to, but hears and understands everything, Rachel said.

"Want to keep a secret? Don't tell Henry," she said.

Rachel's first experience at motherhood went perfectly when she gave birth to daughter Lauryn in 1998. She expected the same when Henry came along June 15, 2002.

"It was the absolutely most perfect day," she said. "A beautiful day, weirdly perfect."

Her water broke at 5 a.m. They went to the hospital, and the anesthesiologist suggested that, because it was her second child, she probably would deliver rather quickly.

Henry had other ideas, putting his mom through 16 painful hours before arriving at 9:01 p.m., and weighing nearly 11 pounds.

When her physician asked if she had been on any kind of medications during her pregnancy, she knew something was, indeed, wrong. Then she saw her baby son.

"I could see his fingers and toes were stuck together," Rachel said. "His head was huge. He was laboring to breathe. I thought, 'OK, it's a weird exception.' I was in shock (from the long labor)."

The physician couldn't explain Henry's condition.

"Nobody had a diagnosis," Rachel said. "Nobody said, 'I've seen this before and it's whatever.' "

A physician from Stanford happened to be on call the following day at Memorial.

"He swings open the door and says, 'It's Apert syndrome. We see that all the time at Stanford,' " Rachel said.

When they brought Henry home four days later, the Johnsons immersed themselves in learning about Apert and where to find the specialized care Henry would need. He'd need surgeries to rebuild his face and head. Surgeries to separate his fingers and make them functional. Surgeries to lift a droopy eyelid. Surgeries with lengthy and painful recoveries.

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