Genetics Northern California

Spina Bifida Program

The Kaiser Permanente Regional Spina Bifida Program was created in 1986 to provide well-coordinated state-of-the-art care for persons diagnosed with myelodysplasia (a general term that includes the condition types listed below). Today the clinic actively follows approximately 200 children and adults from throughout Northern California, currently ranging in age from newborn to 70 years old. Because spina bifida was historically just a pediatric condition, most spina bifida programs were established at pediatric hospitals, and so do not treat adults. Kaiser's Regional Program is one of the few nationwide that includes care for adults.

 

The team at the Regional Spina Bifida Program treats KP members with the following conditions:


Spina bifida
Myelomeningocele 
Meningocele 
Encephalocele
Limited dorsal myeloschisis
Terminal myelocystocele   

Split cord malformation
Sacral agenesis
Caudal agenesis
VATER /VACTERL associations
Spinal cord lipoma

Patients are generally seen in our Regional Multidisciplinary Spina Bifida Clinic once per year (more often in the first year of life or when otherwise indicated). Clinics are held at least once per month, generally on the second Friday of the month. Every clinic is fully booked months in advance, so we urge you to call as early as possible to change or cancel any clinic appointment.

How to get referred to the Regional Spina Bifida Program

Persons with spina bifida, or pregnant women who are carrying a fetus diagnosed with spina bifida, should be referred to the Spina Bifida Program by the primary care provider or other health professional (by E-consult). It is the policy of the Regional Spina Bifida Program to provide timely evaluation of all interested individuals with spina bifida who receive medical care at any facility within the Kaiser Permanente Northern California Region.

Contact Information
Regional Spina Bifida Program
(510) 752-5101 phone
(510) 752-1574 fax

Spina Bifida Program Coordinators:

Alisa Hardwick, RN, MSN, PNP
(510) 752-6920
Regina Gordon, RN, MSN
(510) 752-2028

   

Clerical Support Staff: Melissa Duong

When a patient is referred to the Spina Bifida Program, the program staff will:

  • conduct a telephone interview to confirm that the referral is appropriate

  • obtain any previous medical records

  • refer for any necessary pre-visit tests or consultations

  • schedule the individual for a clinic appointment

The Multidisciplinary Clinic Team

Individuals with spina bifida usually have complex medical needs that require coordinated care for multiple systems, including:

  • central nervous system (brain and spinal cord)

  • genitourinary (bladder, kidney)

  • gastrointestinal (colon)

  • musculoskeletal (spine and lower extremities)

These individuals may also experience multiple developmental and psychosocial issues. For this reason, the Spina Bifida Program includes a clinic team consisting of care providers from a wide range of disciplines including:

  • Adult and Pediatric Neurology

  • Pediatric Neurosurgery

  • Orthopedic Surgery

  • Adult and Pediatric Physical Medicine and Rehabilitation

  • Physical Therapy

  • Occupational Therapy

  • Adult and Pediatric Urology

  • Pediatric Nephrology

  • Developmental Pediatrics

  • Adult Medicine

  • Genetic Counseling

  • Nutrition

  • Social Work

  • Certified Wound-Ostomy-Continence Nurse

  • Clinical Nursing

 

What to expect on the day of the clinic

During the clinic visit, the multidisciplinary team will evaluate and provide or recommend treatment for those health issues relating directly to spina bifida. The Spina Bifida team will also communicate their recommendations to the primary care provider, who will coordinate all other health matters. 

 

What to expect between clinic visits

Between clinic visits, clinic patients may see specialists from among the clinic team as indicated. Also, our nurse specialists provide case management services on a year-round basis, coordinating the many services our patients require within and outside the Kaiser Permanente system.

 

Every Kaiser patient is encouraged to develop a relationship with a personal physician. This primary care provider will be the first point of contact and  handle routine health matters in a medical facility close to your home.  We encourage our patients to contact their primary providers or local facility immediately if there is any suspicion of a new problem, such as a wound or urinary tract infection.  By seeking care early, many problems can be minimized. If your primary provider has questions about your spina bifida, or about any of our clinic's recommendations, please invite them to contact us.

Clinic philosophy and structure

With advances in medicine and coordinated health care services, individuals with NTDs  are living longer and healthier lives. People with spina bifida are now expected to outlive their parents regardless of the severity of their neural tube defect.

The professional staff of the Regional SBC hopes to help our patients achieve full participation in life with maximum opportunity.  It is also our goal to optimize functional and self-care abilities. We emphasize self-care skills when achievable, and self-care agency (the ability to secure needed assistance) when appropriate.

These goals underscore the need for transition planning throughout the life span. Caring for people with spina bifida is no longer a practice exclusive to pediatrics (medical care for infants and children), therefore we have created adolescent and adult clinics. We make every effort to group patients in our clinics by life stage.  We offer clinics that vary somewhat in their clinical focus, and in the providers who are present.

In addition to our Regional Multidisciplinary Spina Bifida Clinic, the Region Spina Bifida Program also offers the following clinics:

Transition clinics for adolescents and young adults

The Regional Spina Bifida Program staff recognizes that adolescence and young adulthood are critical times to intervene in assisting people with spina bifida and their families move toward successful transition into adulthood. Therefore, in October 1999, we established a Transition Clinic for middle (15-18 year old) and late developmental stage (18-25 year old) adolescents and their families.

Our plan is for spina bifida clients to be seen in the Transition Clinic on one occasion, for an hour-long visit focusing on socialization, mobility, vocational choices, educational issues and specific individual concerns. The Transition Clinic staff is comprised of nurse specialists and an adolescent social worker. The adolescent/young adult meets individually with the adolescent social worker while the parents meet with the nurse specialist, allowing both parties to freely share ideas and concerns.

Afterwards, everyone meets together for a combined discussion, including goal setting. For the convenience of the families, the Transition Clinics have been held at several different Kaiser facilities, including Hayward, Walnut Creek, San Jose, Santa Rosa, and Sacramento and an adolescent
 
 
 

Adult spina bifida socialization group

 

Persons with disabilities often feel isolated and alone. The Adult Spina Bifida Socialization Group meetings are held every other month, in the evenings, at the Kaiser Permanente Oakland Medical Center. They are designed to be informative, supportive, and social. No co-payment is charged for attending these meetings. Discussions, focusing on issues and challenges faced by group members, are led by a Psychosocial Clinical Nurse Specialist. The evening often includes a social activity as well, such as dinner at a restaurant.