Patients, Families and Clinicians Celebrate the Center for Thoracic Insufficiency Syndrome Family Reunion

Published on in CHOP News

Center for Thoracic Insufficiency Syndrome (CTIS) Family ReunionOn Sunday, May 21, 2017, patients and their families traveled to Children’s Hospital of Philadelphia (CHOP) to enjoy the Center for Thoracic Insufficiency Syndrome (CTIS) Family Reunion. These families, from various states across the country, are united by a common bond — a diagnosis of Thoracic Insufficiency Syndrome (TIS). TIS is a complex condition that involves chest wall deformities that affect normal breathing and lung growth. In most cases, children with TIS are also born with spinal disorders, such as scoliosis (abnormal spine curvature).

Children who attended enjoyed the face painting, games and music, while the reunion provided an opportunity for families to meet and speak with others in similar circumstances. The many doctors, nurses and other clinical staff who cared for these patients during their time at CHOP looked forward to reconnecting as well. This year’s reunion had a new location, the Buerger Center for Advanced Pediatric Care on the Raymond G. Perelman Campus.

“The CTIS reunion continues to be one of my most cherished days of the year,” says Robert Campbell, MD, director of CHOP’s Center for Thoracic Insufficiency Syndrome. “It’s extremely gratifying to watch the patients who our team treated mature and lead happy, healthy lives. It’s a pleasure and a privilege to care for them.”

CHOP continues to be a world leader in TIS care. Since the Center’s opening in 2009, pediatric orthopaedists, general surgeons, pulmonologists and advanced practice nurses have evaluated more than 300 children with TIS. The most common treatment is the vertical expandable prosthetic titanium rib (VEPTR), a device designed by Dr. Campbell in 1988. The VEPTR is a curved metal rod that is surgically attached to the child’s ribs, spines or pelvis to straighten the spine and separate the ribs so the child’s lungs can grow and expand as the child grows. To date, it is the only FDA-approved device to treat children with TIS.

The Center for Thoracic Insufficiency is one of four centers that CHOP recently named a Frontier Program. Programs with this title receive additional funding and guidance from a multidisciplinary committee. These programs forge important new discoveries, deliver novel therapies and help even more children thrive.

“At CHOP it is our mission to advance cutting-edge research and provide excellent care for the benefit of our patients,” says Patrick J. Cahill, MD, Associate Director of CHOP CTIS and attending physician in the Division of Orthopaedics. “Along with Dr. Campbell and our entire multidisciplinary team, I look forward to continue making great strides in improving the lives of children living with thoracic insufficiency.”