Follow-up Care for Thoracic Insufficiency Syndrome at CHOP | The Children's Hospital of Philadelphia

Center for Thoracic Insufficiency Syndrome

Follow-up Care for Thoracic Insufficiency Syndrome

After the initial surgery to place the vertical expandable prosthetic titanium rib (VEPTR), your child will receive follow-up care in our Center on a regular basis. We will monitor your child's progress and schedule additional surgeries about twice a year to expand the device to accommodate your child's growth. 

Expansion surgeries

VEPTR expansion is a short surgical procedure involving an approximately 1-inch incision. Typically, children spend one night in the Hospital on a medical/surgical floor and are discharged the following day.

Final surgery and "graduation"

When your child's spine and chest have matured and the titanium rib has been fully expanded — at approximately 10 to 16 years old — your child will "graduate" and a final surgery will be scheduled.

During this procedure, the spine-supporting expandable titanium rib will be removed and a spinal fusion will be performed. In a spinal fusion, your child's abnormal curved spinal bones are realigned, fused together and metal implants may be inserted to further stabilize the spine. Spinal fusion is often needed to better support a child's spine and minimize the effects of scoliosis and other spine-curving disorders.

This final step in your child's journey generally requires several days of recovery in the Hospital. Our multidisciplinary team continues to monitor your child and assess other health issues that your child may have.

Long-term outcomes

Outcomes for patients undergoing VEPTR surgery are generally good. The expandable titanium rib allows the lungs of patients with thoracic insufficiency syndrome to grow as the child grows. Spinal fusion makes the spine correction permanent.

Patients who receive treatment for thoracic insufficiency syndrome should continue to be monitored by an orthopedic physician at regular intervals — even after spinal fusion. We will help transition your child's care to appropriate specialists when they become young adults, generally between the ages of 18 and 21.

More experience with thoracic insufficiency syndrome and VEPTR as a treatment option are needed to provide more complete answers about long-term outcomes for children with thoracic insufficiency syndrome. We hope to learn more about patients' quality of life, comorbidities and survival.

Research is underway to help clinicians better understand what causes thoracic insufficiency syndrome, what normal lung growth and capacity is, and how patients with thoracic insufficiency compare. See our research for more details.

Contact us

For more information or to schedule an appointment with the Center for Thoracic Insufficiency Syndrome at CHOP, call 215-590-3722 or contact us online.

Reviewed by: Robert M. Campbell Jr., MD
Date: September 2012

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Organizing Your
Child's Care

In caring for your child with TIS, you may get information and paperwork from many sources. The CHOP Care Binder will help you organize your child's doctors, treatments, medications and more. Learn about Care Binders.