Multiple surgeries give Idaho boy a new face and a new lease on life

JEROME, Idaho — 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 that intentially broke all of the bones in his face, his breathing was labored and often stopped when he slept.

The mother 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 that the facial expressions she'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 Peterson 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 any more."

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 all. The operations have included 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 about the size of a quarter.

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

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 has been a long journey for Cayden's parents and 5-year-old sister, Brynlee. But as Nikki Peterson repeats often that helping Cayden through the string of painful surgeries has been the only choice the family could make.