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Pectus Carinatum: Zane's Story

Zane Johnson smiling while Children's Mercy provider fits him with a pectus brace.

At about age 13, Zane Johnson began to notice a bump in the center of his chest, a bump that got larger as he got older.

“The bump wasn’t causing any problems,” Zane said, “but I was a little self-conscious about it, especially as it got bigger.”

When he had a school sports physical, his parents asked about the bump. By now it was about the size of a grapefruit split in half. The doctor referred Zane to a children’s hospital in Des Moines, Iowa. There he was diagnosed with pectus carinatum. 

Pectus carinatum is an abnormal overgrowth of the rib cartilages, resulting in protrusion of the sternum and rib cartilages, or a “bump” in the middle of the chest. Pectus carinatum is four times more common in males than in females. 

The condition can be detected at any time, from infancy through puberty, but for many kids like Zane, it becomes more noticeable when puberty begins.

“The doctor in Des Moines explained that the pectus wasn’t causing any structural problems for Zane,” said Trudi Foval-Johnson, Zane’s mother. “He suggested bracing to correct it, but because they don’t do it here, he referred us to Children’s Mercy Kansas City for further evaluation and treatment.” 

At the Center for Pectus Excavatum and Pectus Carinatum at Children’s Mercy, Zane’s diagnosis was confirmed and he was identified as a good candidate for a state-of-the-art bracing system called a dynamic compression device. 

Children’s Mercy has the largest experience with this brace in the nation, and has found that almost all patients can be corrected using bracing, including Zane.

The brace corrects the abnormal chest shape by applying the precise amount of external pressure necessary. A special device measures the pounds per square inch that the brace exerts, which is adjusted as the chest slowly assumes a normal shape. 

Depending on the severity of the pectus, most patients wear the brace six to 20 months, 23 to 24 hours a day. An active high school student, Zane began by wearing it 20-plus hours a day, removing it to participate in school sports.

Every two months, Zane and his family make the four-hour trip from his hometown of Le Grand, Iowa to Children’s Mercy so the brace can be adjusted. 

“At each appointment they monitor his progress and adjust the brace to put more pressure on the pectus,” Trudi said.

Today, Zane’s pectus has been transformed to the size of a golf ball split in half, considerably smaller than when he started treatment.

“I haven’t ever had any pain with the brace, just a little pressure,” Zane said. “I can definitely tell that it’s working!”

A senior in high school, Zane hopes that soon he’ll graduate to wearing the brace on a maintenance or retainer schedule.

Trudi said the trips from their central Iowa home to Children’s Mercy over these past three years have been well worth it.

“From the moment we check in to the moment we drive out of the parking garage, coming to Children’s Mercy is always a very positive experience,” Trudi said. 

“We made the commitment to bracing early on and Zane has done what he needs to do to get the best possible correction,” Trudi added. “We know he will still have a deformity, but it’s very minor compared to where he started.”

Zane agreed. “All of the doctors and nurses at Children’s Mercy have been great. And the bracing works! It’s been worth it. That’s for sure!”