States New Jersey

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Newborns with one of these rare conditions often have no family history of the disorder and appear healthy at birth. Because of this, the very best way to prevent permanent damage is to screen all newborns and begin treatment as early as possible when a disorder is confirmed. All newborns are expected to receive a battery of three newborn screening tests unless parents object on religious grounds. The person administering screening must inform parents of the purpose of the test and the need for screening and provide educational materials. Refusal of screening is documented in the infant's medical record. It is the responsibility of the chief executive officer of a hospital or other birthing facility to ensure that parents are informed and supplied with educational materials provided by the state newborn screening follow-up program.

Support for families:

One of the concerns some families may have when they find out their child has a condition detected through the newborn screening program is the increase in health care cost. Fortunately, New Jersey has many laws and programs which have been put in place to make treatment of these conditions more affordable for families.

New Jersey has made a commitment to assist families caring for children with complex, long-term medical and developmental disabilities. For children with special healthcare needs, prompt attention to their condition early in life helps assure they will lead healthier lives when they are older. Each of the State’s 21 counties has a Special Child Health Services  Case Management (SCHSCM) Unit jointly funded by SCHSCM and the county freeholders. SCHSCM Case Managers, with parental consent, work with the child’s parents and with others involved in the care of the child 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 economic needs of the child and family are targeted. Examples of programs that SCHSCM Case Managers may refer families to for family support include New Jersey Parent to Parent and the Catastrophic Illness in Children Relief Fund Program. Click here to find your county’s case manager.

The Catastrophic Illness in Children Relief Fund (CICRF) is a unique State program that provides a financial safety net for New Jersey families overwhelmed by medical expenses that are not fully covered by insurance, State or federal programs, or any other resource. Eligibility requirements include age (birth to 21 years), New Jersey residency, and the amount of uncovered medical expenses incurred must exceed 10% of the first $100,000 of a family’s annual income, plus 15% of any income over $100,000. You can contact the CICRF program for more information by calling 1-800-335 FUND (3863) or visit the CICRF website.

For more information, please visit the NJ Department of Health’s website: http://www.nj.gov/health/

Storage and Use of Dried Blood Spots:

After your newborn has been screened for the conditions, there is some blood which remains on the card and this is called a “residual dried blood spot.” Currently, the New Jersey Department of Health securely stores all residual dried blood spots at ambient temperature and humidity for 23 years after testing. This retention period is changing to 2 years, effective November 1, 2024. Identified samples are not used for purposes other than newborn screening without parental consent or court order. Deidentified samples may be used for internal laboratory quality control and assurance. They are not used for purposes other than newborn screening without parental consent or court order.

Newborn screening information is confidential. Only non-identifiable information is public record.

To see a copy of the blood spot card used in New Jersey click here.