The multidisciplinary team at the Center for Thoracic Insufficiency Syndrome at CHOP can provide a comprehensive evaluation of your child’s spine and chest wall deformity. The Center serves patients all over the United States, as well as international patients.
We do our best to adapt the scheduling of our evaluation and treatment based on the distance our patients travel.
This page will help you understand what to expect in terms of timing, as well as provide links to more detailed information about your child's visit, frequently asked questions about VEPTR, and follow-up care.
Review the your child's visit section of our website for a checklist of what to bring to your child's first appointment along with tips to help prepare your child for a hospital visit.
If your child is a candidate for further extensive evaluation and you are interested in proceeding with this, we will schedule additional testing and consultations with the multidisciplinary team at CHOP.
These tests and consultations are generally scheduled within 4-6 weeks of your child's initial appointment and will span 2-3 full days.
We tailor evaluations to meet your child’s individual needs; therefore, some children may require more consultations than others.
During these intensive days of testing, we will perform:
Once all of the consults, testing and imaging are completed, the multidisciplinary team at CHOP meets to discuss the best treatment for your child. Each specialist involved in your child's care will weigh in with their opinions. Together, the team will debate the pros and cons of VEPTR expansion thoracoplasty, growing rods and any other treatment options to help your child.
Once a consensus is reached, the team will meet with your family to discuss the recommendations. If surgery is recommended and accepted by parents, we will move forward.
Before surgery, your child will have a number of preoperative visits and testing, including:
For details about VEPTR, how the device works and typical results, see VEPTR FAQs.
After surgery, your child will likely have a 7-10 day inpatient hospital stay; 3-5 days of which will be in the pediatric intensive care unit. Every child's recovery after surgery varies. If you have questions, please talk to your child's healthcare team.
After your child is discharged from the Hospital, he or she will need to return a week later so clinicians can inspect the wound and ensure it is healing properly.
In most cases, additional follow-up will then occur every 4-6 months until your child reaches skeletal maturity (between 10 and 16 years old).
Because your child is growing rapidly during these years, surgery will need to be done to expand the VEPTR device so your child's lungs can keep pace. These additional surgeries generally require one overnight stay in the Hospital and recovery time is far quicker than the initial implantation surgery.
For details about continuing care and long-term outcomes for children with thoracic insufficiency syndrome, see follow-up care.
When patients are traveling from further distances, the Center for Thoracic Insufficiency Syndrome works with its partners at The Children's Hospital of Philadelphia to coordinate care into fewer visits to the Hospital.
Patients more than two hours away from CHOP typically follow this timeline for thoracic insufficiency syndrome evaluation, testing, surgery and follow-up:
Patients traveling from across the country typically follow this schedule:
Patients traveling internationally will coordinate care at the Center for Thoracic Insufficiency Syndrome through our partners in International Patient Services (IPS). IPS helps patients and their families manage all of the details of their trip including travel, visas, insurance, places to stay and arranging interpreters to work with your family and the clinicians treating your child.
Our Center will work with IPS to get as much information about your child's condition — records, X-rays and other imaging — before you arrive in the United States.
Plan for a 6-week stay in Philadelphia for your first visit. This will allow us time for your initial visit, as well as imaging and consults needed to determine if VEPTR surgery is the best course of treatment for your child. If clinicians and parents agree to proceed, the child will undergo preoperative testing, inpatient surgery and recovery at The Children's Hospital of Philadelphia.
Like other patients, our international visitors will need to return for expansion surgery as the child grows. We will work with you and IPS to ensure all of your child's health needs are met in a coordinated fashion during follow-up visits.
For more information or to schedule an appointment with the Center for Thoracic Insufficiency Syndrome, call 215-590-3722 or contact us online.
Reviewed by: Robert M. Campbell Jr., MD
Date: January 2013