The Spina Bifida CCS Center at Miller Children’s & Women's Hospital Long Beach provides specialty care for infants, children and adolescents, through 21-years-of-age, suffering from spina bifida and neural tube defects. The Spina Bifida Center has a specialized care team, covering all aspects of the patient’s direct care and also a full-consultation team (see just below the specialized care team) that includes pediatric specialists, such as a urologist, neurosurgeon, orthotist and an orthopedic surgeon.
Treatment
The most commonly prescribed treatments for children to help manage spina bifida and other neural tube defects are medications, catheterization, insertion of VP shunts, orthopedic braces and walkers and if needed, orthopedic surgeries. The full consultant team meets to review clinical cases and make recommendations on the type of care that is most appropriate for each patient. The Spina Bifida team then discusses all treatment options and the appropriate plan of care that best fits the individual patient’s needs.
VP Shunts
The Ventriculoperitoneal shunt is inserted through surgery in Miller Children’s Surgical Center. The shunt relieves pressure inside the skull that is caused from too much cerebrospinal fluid on the brain. The fluid is drained from the ventricles and passed into the child’s body without harm.
Braces/Walkers
The Spina Bifida Center works with each patient to determine the correct style and fit for all braces, splints and walkers. The team coordinates with equipment vendors to ensure all necessary equipment is received. Patients work with specialists in orthopedics and physical therapy to learn special muscle strengthening exercises.
Condition Management
The Spina Bifida Center full consultant team offers a multi-disciplinary approach to medical care to look at each child individually and to optimize health, including a nursing assessment, interviews to address concerns, consultation, case management and treatment. The Spina Bifida Center is able to address many concerns parents and families may have while at home over the phone.
Follow-Up Care
The Spina Bifida Center provides patient and family education, psychosocial support and guidance, family support groups and evaluation and referrals to help the child progress after treatments. The Spina Bifida care team also coordinates with primary physicians, schools and community agencies to ensure an easy transition. Parents are given instruction sheets after each visit to the Spina Bifida Center in order to keep them involved and informed in their child’s treatment and recovery process.
Approved CCS Center
The Spina Bifida Center at Miller Children’s is a California Children’s Services (CCS) approved Special Care Center (SCC). This means a specially designated multi-disciplinary care team is responsible for all care coordination and case management of a patient in this program. Patients typically qualify for the Spina Bifida CCS Special Care Center by medical diagnosis, complexity of their disease and financial status. The Spina Bifida Center also accepts most other private insurance providers.
Your Care Team
The Spina Bifida Care team consists of the primary CORE team and includes pediatric subspecialties in orthopedics, neurosurgery and urology. A pediatric physiatrist is a specialized pediatric doctor of rehabilitation medicine who specializes in the comprehensive management of patients with impairments and disabilities arising from neuromuscular, musculoskeletal and vascular disorders.
Spina Bifida Care Team
Other Team Members
- Pediatric Orthopedic Surgeon – Torin Cunningham, M.D., medical director, Pediatric Orthopedics
A physician who specializes in surgery of the muscles, bones, joints and related structures
in children. - Pediatric Neurosurgeon – Ramin Javahery, M.D.
A surgeon who specializes in surgery on the brain, nerves, spinal cord and nervous system
in children. - Pediatric Urologist – Michael Norris, M.D.
A specialist in urology that deals with the diagnosis and treatment of disorders of the urinary tract or the urogenital system in children. - Orthotist
A trained specialist who prescribes and fits special shoes and orthoses.
- Nurse Practitioner
A nurse practitioner is a registered nurse with special training for providing primary health care, including many tasks customarily performed by a physician. - Clinical Social Worker
Social workers help provide referrals to a broad range of community based agencies and organizations to assist the child and family in obtaining supportive care and assistance. The social worker also is available to provide crisis counseling, individual and family counseling. - Occupational therapists assess functioning in activities of everyday living, including dressing, bathing, grooming and writing, that are essential for independent living.
- Physical Therapist
Physical therapists are health care professionals concerned with prevention, treatment and management of movement disorders arising from conditions and diseases occurring throughout the child’s growth. PTs work to help a child reach their highest level of physical function. - Registered Dietitian
Registered dietitians assist children and families in obtaining special equipment and supplies relative to special dietary needs and coordinates with the school and other outside agencies to facilitate optimal regulation and management.