What is Spina Bifida?
Spina bifida (also called myelomeningocele) is a condition in which there is an opening in the spinal column or backbone of the fetus. Normally, the arches of the vertebra grow and close around the spinal cord to protect it.
In some cases, however, part of the arch (known as the "laminar arch") fails to develop and does not close around the spinal cord. This is called "spina bifida." While most children survive this birth defect, they can be left with many disabilities including paralysis, difficulty controlling bowel and bladder function, hydrocephalus, or excessive fluid in the brain, and mental retardation. The degree of impairment is usually related to the location of the defect. The higher the opening occurs on the spine, the greater the
defect.

Signs and Symptoms of Spina Bifida

There are four types of spina bifida: occulta, closed neural tube defects, meningocele and myelomeningocele.

Occulta is the mildest and most common form of spina bifida in which one or more vertebrae are malformed. "Occulta" means "hidden" in Latin, and indicates that the malformation or opening in the spine is covered by a layer of skin. This form of spina bifida rarely causes disability or symptoms.

Closed neural tube defects make up the second type of spina bifida. This form consists of a diverse group of spinal defects in which the spinal cord is marked by a malformation of fat, bone or membranes. In some patients there are few or no symptoms; in others the malformation causes incomplete paralysis with urinary and bowel dysfunction.

Meningocele spina bifida occurs when the meninges protrude from the spinal opening, and the malformation may, or may not be covered by a layer of skin. Some patients with meningocele may have few or no symptoms, while others may experience symptoms similar to closed neural tube defects.

Myelominingocele spina bifida is the most severe and occurs when the spinal cord is exposed through the opening in the spine, resulting in partial or complete paralysis of the parts of the body below the spinal opening. The paralysis may be so severe that the affected individual is unable to walk and may have urinary and bowel dysfunction.

Treatment in the Spina Bifida Clinic

The Orthopaedic Hospital Spina Bifida Clinic began in the 1950s. The goal was to create a place where children with spina bifida could be evaluated by doctors and therapists from various specialties working together to treat the complex nature of children with spina bifida.

The treatment team provides long-term management and coordination of care with patients, their families and primary care physicians. The treatment program includes urologic testing, radiology services (X-ray, MRI and CT scan), physical and occupational therapy, bracing assessment and nutrition consultations.

Spina Bifida Team

The Orthopaedic Hospital Spina Bifida Clinic team includes a pediatric orthopaedist, pediatric neurologist, pediatric urologist, pediatrician, physical and occupational therapists, pediatric nurse specialist, social worker, dietician and orthotist specializing in congenital disorders. Consultations are also available with audiologists, speech pathologists, nutritionists and genetic counselors. The staff is also available to assist patients in applying for CCS.

The core treatment team includes:

The Pediatric Orthopaedist is the surgeon who specializes in the musculoskeletal system of children, including fractures, trauma, bone diseases and disorders, soft tissue impairments and pediatric spinal deformity such as scoliosis and kyphosis. They manage the problems associated with spasticity and when necessary, provide surgical interventions such as tendon lengthening or correcting a bony deformity. Our physician offers insight into the orthopaedic issues facing both children and adults with spina bifida and provide treatments that minimize deformity and maximize mobility and function.

Richard Bowen, M.D.
Orthopaedic Surgeon

The Pediatric Neurologist is a physician who specializes in disorders of the brain, spinal cord, peripheral nerves and muscles in children. Pediatric neurologists focus on establishing the underlying cause of neurological disorders, including spina bifida. They also treat the associated medical problems such as seizures, movement disorders, metabolic conditions and neurobehavioral issues.

Michel Philippart, M.D.
Neurologist

The Pediatric Urologist is a physician who specializes in the diagnosis and treatment of congenital and acquired urological conditions and diseases in children. The pediatric urologist at Orthopaedic Hospital provides medical management and surgical intervention for bowel and bladder function, one of the most persistent problems this patient population experiences.

Bernard Churchill, M.D.
Urologist

The Pediatrician reviews medical issues and coordinates the general healthcare of the patient, in addition to working with the orthopaedic surgeon for pre-operative assessments if surgery is indicated and overseeing medical issues for hospitalized patients.

Marinda Tu, M.D.
Pediatrician

The Physical Therapist is a health care professional trained to assess and treat movement and function. Physical therapists examine muscle range of motion, spasticity, strength and posture and assess their impact on function and mobility. Our physical therapists communicate with community therapists in the design and implementation of treatment interventions and equipment such as wheelchairs and braces. Gait studies at the Kameron Gait and Motion Analysis Laboratory are conducted by physical therapists.

Cindy Bailey, PhD, D.P.T., O.C.S., S.C.S., A.T.C., E.M.T.
Physical Therapist

The Occupational Therapist is a health care professional who provides skilled treatment to help individuals achieve independence in all facets of their lives. Occupational therapists give people the "skills for the job of living" necessary for independent and satisfying lives. Our occupational therapist assesses and makes recommendations for treatment of fine and gross motor skills, feeding and oral-motor development, computer use, dressing, bathing and other activities of daily living.

Occupational Therapist Corey Fitzgerald with a young patient

The Social Worker provides psychosocial assessments, assists with locating community resources and assists in the coordination of schooling and social activities.

Erika Bocanegra, M.S.W.
Social Worker

The Nurse Specialist assists in making sure all medical orders are carried out, and provides case management and nursing assessment for the patient.

Cynthia Costello, R.N.
Nurse Specialist

Also part of the core team is a registered dietician and orthotist. The dietician provides assistance in meal plans so patients receive adequate caloric intake for healthy growth and development. The orthotist works with the team to prevent unequal or unbalanced muscle groups which can lead to deformities as the child grows. If a deformity is perceived, the orthotist works with the therapists in bandaging, casting, or bracing to bring the deformed extremity into the proper plane of function to maximize available motor function.

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