With entirely paralyzed feet and partially paralyzed legs, 9-year-old Katie has had to learn how to do things the "Katie Way."
The Spina Bifida CCS Center at Miller Children’s Hospital 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 CORE care team, covering all aspects of the patient’s direct care and also a full-consultation team that includes pediatric specialists, such as a urologist, neurosurgeon, orthotist, and an orthopedic surgeon.
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.
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.
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.
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.
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.
The Spina Bifida Center at Miller Children’s Hospital 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.
Visit the Spina Bifida CCS Center.