Definition

Number of children born with spina bifida per 10,000 live births to women residing in New Jersey in a specified time interval.

Numerator

Number of children born with spina bifida among live births to women residing in New Jersey in a specified time interval.

Denominator

Count of all live births to women residing in New Jersey in a specified time interval.

Why Is This Important?

Spina bifida is a neural tube defect caused by the failure of the fetus's spine to close properly during the first few week of pregnancy. Research with humans and animals suggests a genetic basis for the defect. It is considered likely that spina bifida results from the interaction of multiple genes and environmental factors. Research has shown that lack of folic acid is a contributing factor in the pathogenesis of neural tube defects, including spina bifida. Supplementation of the mother's diet with folic acid can reduce the overall incidence of neural tube defects by about 70 percent.

Available Services

Early Intervention System: The New Jersey Early Intervention System (NJEIS), under the Division of Family Health Services, implements New Jersey's statewide system of services for infants and toddlers, birth to age three, with developmental delays or disabilities, and their families. The Department of Health (NJDOH) is appointed by the Governor as the state lead agency for the Early Intervention System. [http://www.nj.gov/health/fhs/eis] Since 2008, NJEIS has regionalized the system's point of entry for referral of children, birth to age three, with developmental delays and disabilities. Families and health care providers can call 1-888-653-4463 to refer a child to the NJEIS. NJDOH Family Health Services Case Management Units: Each of New Jersey's 21 counties has a Special Child Health Services (SCHS) Case Management Unit. SCHS Case Managers, with parental consent, work with the child's parents and physicians to evaluate an affected child's strengths and needs; and develop an individual service plan for the child and family. Medical, educational, developmental, social and financial needs of the child and family are targeted. NJ Department of Health, Special Child Health and Early Intervention Services, PO Box 364, Trenton, NJ 08625-0364, Phone: (609) 984-0755, website: [http://www.state.nj.us/health/fhs/sch/] Catastrophic Illness Relief Fund: The Catastrophic Illness in Children Relief Fund is a financial assistance program for New Jersey families whose children have serious illnesses or conditions not covered by insurance, state or federal programs, or other funding sources. Contact the Catastrophic Illness in Children Relief Fund Program: 1-800-335-FUND (3863)

Data Notes

**Counts and rates are suppressed when counts are below 5 due to instability of rates. Observed differences in the annual frequency of a specific birth defect may be due to random variability.

References and Community Resources

Statewide and county profiles of the most prevalent birth defects can be found at, [http://www.nj.gov/health/fhs/bdr/datum/] Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, [http://www.cdc.gov/ncbddd/index.html] Spina Bifida Association, 4590 MacArthur Boulevard, NW Suite 250, Washington , DC 20007, 800-621-3141 March of Dimes Foundation, 1275 Mamaroneck Avenue, White Plains, NY 10605, askus@marchofdimes.com, [http://www.marchofdimes.com], Tel: 914-428-7100, 888-MODIMES (663-4637), Fax: 914-428-8203 National Organization for Rare Disorders (NORD), P.O. Box 1968, 55 Kenosia Avenue, Danbury, CT 06813-1968, orphan@rarediseases.org, [http://www.rarediseases.org], Tel: 203-744-0100, Fax: 203-798-2291