Kids With Chest Wall Deformities Get Comprehensive Care at Clinic

Six months ago Justin Rosales’s chest dipped deep into his sternum. The 14-year-old was too embarrassed to ever take off his shirt or show his friends how he looked. But rather than undergoing a major invasive operation, he and his parents chose UCSF’s groundbreaking Magnetic Mini Mover Procedure, a minimal surgery where two magnets are implanted in his chest — part of a novel approach to correcting sunken chest syndrome.

Justin is being treated at the UCSF Comprehensive Center for Chest Wall Deformities, a new interdisciplinary pediatric clinic at UCSF Benioff Children’s Hospital that offers a wide range of interventions for children with all types of chest wall deformities, from common to complex. Justin has the most common chest wall deformity called pectus excavatum, a congenital disorder which causes the chest to have a sunken or "caved in" appearance.

“The new clinic is one stop shopping in terms of surgical options,” said Shinjiro Hirose, MD, a pediatric surgeon at UCSF Benioff Children's Hospital and its Fetal Treatment Center, and director of the new chest wall deformities clinic. “Any kid with a chest wall deformity can come to the clinic and get access to comprehensive care, ranging from pulmonologists to cardiologists to orthopedists. From the clinical standpoint, that really is unique and offers parents streamlined access without having to travel to several different clinics.”

At present, pectus excavatum, or sunken chest disorder, can be repaired only by an invasive operation requiring a stay of three to seven days in the hospital. More than 4,000 patients worldwide undergo this operation every year.

“Kids are in agony with the traditional surgery,” said Hirose, who implanted the Magnetic Mini Mover in Justin’s chest in a 30-minute surgical procedure where one magnet, encased in titanium, is attached to the sternum. The small incision then is closed, and the patient usually leaves the hospital on the same day. Afterward, the patient continues to wear an orthotic brace that contains another embedded magnet.

As the magnets slowly are drawn together, the chest wall reforms to its normal position within a two-year-period. “Our new intervention could change the whole approach to this disease,” said Hirose.

UCSF Team Pioneers Pediatric Procedure

The procedure was devised through the UCSF Pediatric Device Consortium — a group of physicians, engineers, scientists and others — all inventors collaborating and sharing ideas to create pediatric medical devices. The team is led by Michael Harrison, MD, director emeritus and co-founder of the Fetal Treatment Center at UCSF Benioff Children's Hospital, and UCSF bioengineer Shuvo Roy, PhD, an associate professor in the UCSF School of Pharmacy.  

The device currently is being studied in a clinical trial funded by the U.S. Food and Drug Administration, and early results are very promising. The trial is only for children ages eight to 14 and is still is accepting new patients.

Typically children with chest wall deformities are treated with a focus on mere survival, with minimal tracking of these patients over time. But the UCSF clinic is taking a new approach, evaluating patients and following them long term, from infancy into adulthood in order to better evaluate the progression of the disorder and the success of the interventions.

“One of UCSF’s biggest strengths is its mission of integrating patient care, teaching and research,” said Hirose. “The key to research is following up and realizing it’s no longer simply a matter of survival but quality of life.”

Justin returns to UCSF from his home in Stockton on a monthly basis to meet with doctors and have his brace adjusted by Darrell Christensen, CO, an orthotist in the UCSF Department of Orthotics and Prosthetics, who has worked with him since his surgery. “For the first time we’re seeing the shape of his chest start to change,” said Hirose. “It’s definitely flatter and wider. Justin is diligent about wearing his brace. Kids who participate in clinical trials are usually motivated.”

The magnets also contain a monitoring chip that is downloaded at each visit to measure compliance. A big challenge in pediatric devices is making sure the kids actually wear them. But for Justin, it's a challenge he is excited to take on since he knows the chip is keeping track of when the external device is worn. He takes pride in his compliance score and always asks how it compares to other kids wearing the brace.

“He’s taking responsibility for it and is excellent with compliance,” said Jill Imamura-Ching, RN, a clinical research nurse in the UCSF Department of Pediatric Surgery. 

“There is a big difference in his confidence since before the surgery,” said Carlos Rosales, Justin’s dad. Now Justin is preparing for a week-long camping trip in Yosemite, part of his work towards becoming an eagle scout. During the trip he’ll swim, fish and participate in all of the activities with his troop. His parents encourage physical activity, including martial arts, with the exception of one.

“Football is out of the question,” said Rosales.

Photos by Susan Merrell