Genetics Northern California

Spina Bifida Program

The Kaiser Oakland Regional Spina Bifida Program is a comprehensive multidisciplinary program serving patients in the Kaiser Northern California region who have spina bifida.   
Spina bifida (“split spine”) refers to incomplete closure of the neural tube- the structure from which the brain and spinal cord is formed.  

Patients who are followed by the spina bifida program are individuals born with:
    • myelomeningocele
    • split cord malformation
    • spinal cord lipoma
    • dermal sinus tract malformation
    • caudal regression syndrome (sacral agenesis)
    • tethered cord syndrome
    • limited dorsal myeloschisis 
    • terminal myelocystocele
    • benign spinal cord tumors
    • VATER/VACTERL associations 

Our program is one of the few in the country that serves both children and adults, providing coordinated collaborative care across the lifespan. Patients are referred to the spina bifida program by Kaiser health care providers or patients can self-refer. Genetic counselors also refer pregnant patients who are expecting a child with spina bifida and who are interested in discussing the care needs of babies born with spina bifida.
The goal of the Spina Bifida Program is to maintain optimal health of the patient, and prevent secondary disabilities and adverse complications.

We focus on improving patient quality of life by reducing/eliminating incontinence (urine or stool accidents) associated with neurogenic bladder and neurogenic bowel.  

We support independence which maximizes an individual’s ability to fully engage in their community and society at large. 

We have separate pediatric and adult clinics. When patients come to clinic, they are seen by a team of specialists who address their individual care needs.  These specialists may include:
    • neurosurgeon or neurologist
    • urologist 
    • physiatrist
    • orthopedic surgeon
    • physical or occupational therapist
    • registered dietician
    • developmental pediatrician or family medicine physician
    • advanced practice nurse coordinator
    • genetic counselor
    • social worker
    • durable medical equipment specialist. 

All patients are followed by a spina bifida nurse coordinator who:
    • Collaborates with the multidisciplinary team to develop patient-specific care plans  
    • Provides patient education which focuses on the self-care skills and knowledge needed for the person to live independently in the community 
    • Works closely with the medical social worker to ensure patients access resources provided by schools, medical equipment/supply vendors, and community-based programs or organizations

To make a referral, schedule an appointment or if you have questions, please contact: 

Regional Spina Bifida Clinic:
Phone:  510-752-5101
Fax:      510-752-1574

Spina Bifida Medical Director:
Donna Deng, MD MS
    Neuro-Urology - Lead, Kaiser Permanente NorCal
    Medical Director (Clinical) -- Kaiser NorCal Regional Spina Bifida Clinic
    Kaiser Oakland Urology

Nurse Coordinators:
Alisa Hardwick RN, MSN, CPNP
Phone:  510-752-6920

Regina Gordon, RN, MSN
Phone:  510-752-2028

Elizabeth Li-Watts, RN, MPH
Phone:   510-752-2822

Spina Bifida Program Social Worker:
Sarah Grenham, MSW, LCSW 
Phone:  510-752-2640

Clinical Support Staff:
Melissa Duong
Jovante Aaron

Last reviewed: May 28, 2020
Reviewed by: Alisa Hardwick, RN, MSN, CPNP