The Spina Bifida Program is a comprehensive, coordinated inpatient and outpatient service for children of all ages with neural tube birth defects and spinal cord disorders. The program provides team evaluation and periodic re-evaluation utilizing the disciplines of neurosurgery, orthopedic surgery, urology, rehabilitation medicine, occupational therapy, physical therapy and social services. This coordinated, interdisciplinary team focuses on providing the best care possible to each and every patient. The team’s goal is to help each patient lead a normal life.

Urologic testing, radiology services, developmental testing, bracing assessment and full diagnostic services (i.e., CT scan, evoked potentials and MRIs) are integral components of each child’s program. Nutrition consultations are available as needed. Emphasis is placed on clear communication between the spina bifida team at Children’s Hospital and the child’s pediatrician, school, and community service agencies.

The Spina Bifida Clinic Staff
What is Spina Bifida, and How is it Treated?
The Spina Bifida Clinic at Children’s Hospital
What About Spinal Cord Injuries?
Useful Links
How to Make an Appointment

The Spina Bifida Clinic Staff

Mary Louise Russell, MD
Medical Director
Physical Medicine and Rehabilitation

Theodore J. Spinks, MD, Neurosurgeon
Ian Pollack, MD, Neurosurgeon
Elizabeth Tyler-Kabara, MD, PhD, Neurosurgeon
Mark F. Bellinger, MD, Urology
Francis X. Schneck, MD, Urology
Vincent F. Deeney, MD, Orthopedic Surgery
Stephen Mendelson, MD, Orthopedic Surgery
William F. Bradley, MSW, Social Services
Betty Little, Secretary
Georgia Wiltsie, RN, Nurse Coordinator
Pam Arianna, RN, BSN

What is Spina Bifida, and How is it Treated?

The term "Spina Bifida" applies to a failure of the spinal cord and spinal column to form properly before birth. This failure can occur anywhere from the head to the tailbone, but is more common in the lumbar spine. It can occur with a wide range of severity. Spina Bifida Occulta is usually found incidentally and is often of no consequence. Myelomeningocele is a form of Spina Bifida in which the spinal cord is exposed to air at birth. Between these two extremes are other forms, each with its own characteristics.

The treatment of Spina Bifida, in principle, is to close the opening in the spine and recreate (as much as possible) the normal shape of the spinal cord and the tissues around it. The goal is to protect the spinal cord and to assure that it is not attached to the surrounding tissue. The timing of the surgery depends on the form of Spina Bifida. Myelomeningocele must be repaired soon after birth because the exposed spinal cord is susceptible to damage and infection. Other forms of Spina Bifida are repaired later, when the child is larger and older, making the surgery safer.

After the initial repair, patients need close follow-up by a coordinated team of physicians, nurses, and therapists. They may need to be treated for hydrocephalus, urologic symptoms, scoliosis, tethered cord, or muscle weakness. The exact needs of each patient depends on the type and spinal cord level of their Spina Bifida, making coordination between different members of the Spina Bifida team essential in tailoring the best treatment for each unique patient.

This is only a broad overview of Spina Bifida. If you would like more details, a good place to start is the Spina Bifida Association of America. If you would like more details about the specific needs of you or your child, talk to your doctor or call the Spina Bifida Clinic at Children’s Hospital at (412) 692-5096.

How Does the Spina Bifida Clinic at Children’s Hospital Work?

The Spina Bifida Clinic at Children’s Hospital sees patients on Monday afternoon. Each patient and their family are placed in an exam room, and the specialists come to see them. For the first visit, at least one member of each group (neurosurgery, orthopedics, urology, physical therapy, occupational therapy, social services, and rehabilitation medicine) will see the patients, as will the nurse noordinator, Georgia Wiltsie. Each team makes their recommendations regarding diagnostic studies and follow-up, which will be coordinated by the clinic administrators. For subsequent visits, patients see only the specialists they need.

What About Spinal Cord Injuries?

Patients with spinal cord injuries share some similarities to Spina Bifida patients, and utilize many of the same resources, so they are often seen in the clinic as well. The clinic format for these patients is the same for the Spina Bifida patients, and their needs are handled in the same coordinated manner.

Useful Links

Below are some other websites that are useful to Spina Bifida patients and their families

Spina Bifida Association of America
National organization dedicated to promoting the prevention of Spina Bifida and to enhance the lives of all affected.

HOPE Network
Non-profit organization offering sports, fitness, and recreation opportunities for persons with disabilities.

Also...
For sled hockey, a sport enjoyed by many Spina Bifida patients, contact mpsledhockey@yahoo.com.

And...
For clothing, bracing, and other equipment geared toward Spina Bifida patients, see the following websites...

Hatchbacks
Special shoes for special needs. Developed and patented a hinged shoe that opened from the back to make it easy to fit a toddler with shoes.

Bedwetting Store
"Largest distributor" of bedwetting-related products in the United States. Provides information to help patients and families choose the products that meet their needs.

Keeping Pace: Children's Orthopedic Footwear
Provides shoes that fit easily and quickly over a brace/afo (ankle foot orthotics) without being oversized for children. Founded by a parent of a special needs child.

How to Make an Appointment

To make an appointment, call the Spina Bifida Coordinator’s office at (412) 692-5096 or call the Children's Hospital Pediatric Neurosurgery Department at (412) 692-5090

Referrals, insurance coverage, etc. will be handled by the coordinator’s office.