Definition

Number of children with anencephaly delivered per 10,000 live births and stillbirths to women residing in New Jersey in a specified time interval.

Numerator

Number of children with anencephaly delivered among live births and stillbirths to women residing in New Jersey in a specified time interval.

Denominator

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

Why Is This Important?

Anencephaly is a serious and rare birth defect which occurs when an embryo's neural tube fails to close during the first month of pregnancy. As a result, major portions of the brain, skull, and scalp fail to develop. A baby born with anencephaly may be stillborn or die within a few hours or days after birth. The cause of anencephaly is unknown, but it is hypothesized that a mother's diet and vitamin intake play a role. Recent studies have shown that addition of folic acid to the diet of females of childbearing age may significantly reduce the overall incidence of neural tube defects.

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 for years 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] Anencephaly Support Foundation, 20311 Sienna Pines Court, Spring, TX 77379, [http://www.anencephaly.net/] 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, Voice Mail 800-999-NORD (6673), Fax: 203-798-2291