Patients, Families Celebrate the Center for Thoracic Insufficiency Syndrome Family Reunion at CHOP

Published on in CHOP News

Thoracic Insufficiency Syndrome Family ReunionMore than 100 patients and families traveled to The Children's Hospital of Philadelphia (CHOP) to take part in today’s Center for Thoracic Insufficiency Syndrome (CTIS) Family Reunion. These families came from all over the country to meet and speak with other families in similar circumstances and reconnect with the doctors, nurses and clinical staff who cared for them during their time at CHOP. Many of the patients who attended would likely not be alive today if it were not for the treatment they received from the Center for Thoracic Insufficiency Syndrome at CHOP.

The reunion, held at the Leonard and Madlyn Abramson Pediatric Research Center, on the Raymond G. Perelman Campus, featured face painting, music and a special visit by the Phillie Phanatic.

Since the Center’s opening in 2009, pediatric orthopedists, general surgeons, pulmonologists, and advanced practice nurses have evaluated more than 300 children with thoracic insufficiency syndrome (TIS).  TIS is a complex spine and chest wall condition that affects normal breathing and lung growth.

“It is amazing to see how far these patients have come,” says Robert M. Campbell, MD, director of CHOP’s Center for Thoracic Insufficiency Syndrome. “Many of the parents here today were told by other doctors that their child would not survive, but thanks to the multidisciplinary approach by surgeons at CHOP, these children now have a chance to grow up to be healthy adults.”

The most common treatment for TIS 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.