Why Is This Important?

Hypoplastic left heart syndrome (HLHS), is a heart condition that is present at birth, and often is called a congenital heart defect. HLHS is a group of related heart defects that, together, mean that the left side of the heart is underdeveloped. There is no known cause for HLHS. The problem develops before birth when there is not enough growth of the left side of the heart. White babies seem to have higher rates of HLHS than babies of other races or ethnicities. Maternal multivitamin use before and during pregnancy appears to decrease the risk of HLHS.

Definition

Number of children born with hypoplastic left heart syndrome per 10,000 live births to women residing in New Jersey in a specified time interval.

Data Sources

• Birth Certificate Database, Office of Vital Statistics and Registry, New Jersey Department of Health
  (https://www.nj.gov/health/vital/)
• Early Identification and Monitoring Program, Division of Family Health Services, New Jersey Department of Health
  (https://www.nj.gov/health/fhs/eis/)

How the Measure is Calculated

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)

More 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] American Heart Association, National Center, 7272 Greenville Avenue, Dallas, TX 75231, (800) 242-8721 Congenital Heart Information Network, 101 N Washington Ave, Suite 1A, Margate City NJ 08402-1195, 609-822-1572 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