Boy recovers from final surgery in disorder

JEROME - Nikki Peterson is happy that the last big surgery is over and her son's life should be extended.

Cayden Peterson can breathe at night now. Before a June surgery broke all of the bones in his face, his breathing was labored and often stopped when he slept. She is grateful that the operation her family has been preparing for all seven years of Cayden's life was successful.

But she starts to tear up when she talks about his face.

It's different now the facial expressions shes's memorized have changed. The small nose that she kissed every day is different. She's watched her baby boy grow into a 7-year-old and now she is watching him with new eyes, looking for familiar expressions and his old smile.

"My mom said it best - somebody doesn't have to die (for you) to grieve," Nikki said, wiping tears from her eyes. "I've been grieving for his face. You don't have the same face for seven and a half years and then change it. I can't read his facial expressions anymore."

Cayden has Apert syndrome, a rare genetic disorder that affects one in 200,000 newborns. The disorder causes the skull and facial bones to fuse together prematurely, creating a rigid cage around a child's growing brain.

When he was 5 months old, Cayden underwent his first operation to break his skull so the bones could grow at the same rate as his brain. The string of surgeries has continued, 14 in total, from cutting apart the skin between his fingers and toes so they could function individually to the last operation to expand his airways from the size of a dime to around the size of a quarter.

The operations included a string of six surgeries in seven months of Cayden's early years something his mother said was like taking large steps forward, only to go back to where they had started in his developmental process.

Cayden's father, Ryan, 30, and Nikki, 29, were both raised in Jerome and have been married for eight years. Cayden, their first child, was also the first baby born in Idaho with Apert syndrome. The Petersons didn't know where to turn for help.

It's been a long journey for Cayden's parents and 5-year-old sister, Brynlee. But as Nikki repeats often of helping Cayden through the string of painful surgeries that are ultimately expected to prolong his life expectancy to that of the average American, "We just do it. You don't get a chance to think about it."

Since June, while other children lived the rough-and-tumble life of long summer days and baseball in the park, Cayden recovered from his 13th surgery, performed by Dr. Rodney Schmelzer at Cardon Children's Medical Center in Mesa, Ariz. The 4 1/2-hour surgery consisted of breaking all the bones in his face and then reconstructing them a rare and dangerous operation that Schmelzer has performed 15 to 20 times in his career. He spent months rehearsing for the surgery and practiced the night before on a model of Cayden's skull.

A large, titanium half-circle halo was screwed onto each side of Cayden's head and connected to the upper part of his mouth. Each day, his parents would turn the screws connected to the metal contraption up to 1.5 millimeters so his upper palate would advance prematurely. Cayden will grow into his new look as time progresses, and Nikki said waiting until he was 7 was the best age to do the surgery. Over the summer, his facial tissue has been stretched 27 millimeters - a little more than an inch.

The halo was removed in August and Cayden and his family can breathe easier now, knowing that the hardest leg of his medical journey is over.

"We've never gone into a surgery happy and anxious, but this one we did," Peterson said.

The latest surgery, performed at Primary Children's Hospital in Salt Lake City, took only 20 minutes to remove the halo. Afterward, the family held a party for everyone who has been instrumental in Cayden's journey. Nikki said that after the halo was removed Cayden was on "cloud 899" and couldn't stop smiling.

No more major surgeries are scheduled for the red-headed boy, although Nikki thinks another one to correct his ankles will take place in the future.

All in all, she estimates Cayden's surgeries have cost close to $1 million.

"I have no real idea of how much it has cost," Peterson said. "Everything is a specialty with Cayden."

Denied three times from getting disability insurance through the government, the family was able to get on the Katie Beckett Medicaid Program, a special eligibility process that allows children with long-term disabilities to get an Idaho Medicaid card.

With life-changing surgery behind them, the Petersons are adjusting to a new rhythm of life. Cayden is starting first grade at St. Edward's Catholic School, a new scene from Canyonside Christian School in Jerome. Nikki is taking 11 credits at the College of Southern Idaho with the goal of becoming a surgery technician, something she attributes to her experiences with Cayden's surgeries.

Nikki said her family's now faced more of an emotional challenge now that Cayden's latest surgery is complete. The family, she said, has just pushed through things, counting their blessings along the way. Her faith, her marriage and her family have been her stability throughout the years.

"Ryan gets me through. Someone told me that the statistics for divorce is higher when you have a child with disabilities and I never wanted to be a statistic," she said. "It has just made us closer. It's hard for anyone else to fully understand, so we just have each other and we are both very stubborn we don't give up."

Cayden's little sister, Brynlee, has witnessed his joys and struggles along the way. Nikki said she and Ryan have had to learn to give their daughter the attention she needs in the midst of Cayden's surgeries and recoveries. Mother and daughter often have girl dates, and Brynlee got to go to Salt Lake for the last surgery - a first for the freckle-faced girl.

"They are really close - Brynlee takes care of him," Peterson said. "It is hard to know right now how much this will all affect her."

There was no indication that Cayden would have challenges before he was born. But Peterson said knowing ahead of time wouldn't have changed a thing. Many people give their Apert syndrome babies up, she said, and she wishes she had the ability to adopt children like her son.

"He's my inspiration. These kids are amazing. He's changed my life and made me a better person," she said. "How often does your kid do that for you?"