About Our Spina Bifida Clinic

CHKD's spina bifida clinic is a multi-disciplinary program for children and youth ages birth to 21 with birth defects of the spine and spinal cord. At our spina bifida clinic, families can see all specialists, complete testing and receive a variety of services during one appointment.

Clinic meets on the first Wednesday of every month, from 8:30 a.m. to 3 p.m., on the 5th floor of the hospital at 601 Children's Lane in Norfolk. On the day of clinic, please bring the following:

  • Insurance cards 
  • All braces and splints 
  • Extra continence supplies 
  • A list of all medications and dosages

Some patients may be scheduled for diagnostic testing in the radiology department the morning of the clinic. Children with spina bifida may be referred for any of the following tests: CT Scan, MRI, ultrasound, urodynamic study and/or VCUG.


Conditions We Treat

  • Meningocele: A birth defect in which the baby's spinal cord does not develop properly. Symptoms include an abnormal tuft of hair, a birthmark, or protruding spinal cord tissue, which may cause physical disabilities. 

  • Myelomeningocele: This is the most severe type of spina bifida in which a baby is born with a gap in the bones of the spine. This can cause moderate to severe disabilities, such as full or partial paralysis below the spinal opening, bladder and bowel dysfunction.

  • Lipomyelomeningocele: A rare defect that causes a fatty mass under the skin that is connected to the end of the spinal cord. This can tether or pull on the spinal cord as the child grows, causing neurologic problems including weakness, bladder, and bowel dysfunction.


Additional Resources

VP Shunt (ventriculoperitoneal shunt) Malfunctions

In hydrocephalus, the ventricles of the brain become enlarged with fluid of the brain and spinal cord (cerebrospinal fluid). This condition causes the brain tissue to press against the skull, causing serious nervous system (neurological) problems. 

Surgical procedures of shunts allows the excess fluid to drain and relieve the pressure in the brain into the abdominal cavity. If these shunts malfunction, children must receive emergency medical attention.  

Symptoms of shunt malfunction can vary from person to person but the most common are:

  • Headaches 
  • Vomiting 
  • Unusual irritability 
  • Excessive sleepiness 
  • Neck pain 
  • Increased head size (infants)  

Bowel Management Concerns

Urological Management Concerns

Latex Allergy

Latex Allergy in products in the hospital and home environments

 

Resources for Transitioning to Adulthood

The following resources and agencies can assist spina bifida patients with the transition to adulthood and adult care providers. 

The Virginia Department of Rehabilitative Services updates:

DARS Long Term Rehabilitation Case Management Services (LTRCM) (virginia.gov)

Portsmouth Office
601 Port Centre Pkwy, Ste 100
Portsmouth, VA 23704
Voice/TTY (757) 686-5014

Richmond – Central Office
8004 Franklin Farms Drive
Richmond, VA 23229
Voice (804) 662-7000
TTY (800) 464-9950

Fishersville Office
50 Andrew Russell Lane, Ste A
Fishersville, VA 22939
Voice/TTY (540) 332-7485

DARS Independent Living Services (virginia.gov)

Centers for Independent Living (CILs) provide services to individuals with significant disabilities as well as to the local community at large. CILs provide the following core services to individuals:

  • Advocacy
  • Peer Counseling
  • Independent Living Skills Training
  • Information and Referral; and
  • Transition Services for youth, people living in institutions, and services that prevent institutionalization

Kevin Koziol
Director of Independent Living
Virginia Department for Aging and Rehabilitative Services
Voice: 804-662-7078; 800-552-5019 (Toll Free)
TTY: 800-464-9950
Email: Kevin.Koziol@dars.virginia.gov   

North Carolina Department of Health and Human Services 

Find a local office listing at the following link:  NC DHHS: Employment and Independence for People with Disabilities.