Newborn Screening Program

The Kansas newborn screening program is a collaborative effort between public health, hospitals, providers and the parents of the infants screened. Screening is a public health service. Since 1965, it has been available to all infants in Kansas and it is done shortly after birth.

While most newborns look perfectly healthy, there are some diseases that aren't visible. Unless these diseases are identified and treated early, they can cause severe illness, mental retardation, or in some cases death. To test for these diseases, about 24 hours after birth, a baby's heel is pricked and a small sample of blood is collected by the hospital staff. This blood is then sent to the State public health laboratory where it is tested for several different diseases. If the test is abnormal, re-testing must be done to confirm a diagnosis.

State public health staff are available to notify and assist both providers and parents with next steps. Most infants with abnormal newborn screening results have normal re-testing. Initial NBS results can be abnormal because the blood was drawn too early, the baby is premature, and many other reasons. When the first screening test indicates a problem may be present, a second diagnostic test is done to determine whether or not the problem or disease is truly present. If a baby truly has a disease, a system of providers is available to assist the family with immediate treatment.

Prior to July 1, 2008, Kansas newborns were screened for PKU, galactosemia, hypothyroidism, sickle cell anemia, and hearing.

Starting July 1, 2008, Kansas newborns are screened for the core panel of 29 conditions recommended for inclusion in all state screening programs by the national American College of Medical Genetics. The state will utilize tandem mass technology (MS/MS), a major technological advance in newborn screening.

The Kansas program encompasses all components of a comprehensive state system:

• Screening - About 40,000 KS births/initial tests each year with about 2,000 needing retest,
• Follow-up - Appropriate health care providers are notified and staff track to assure retesting,
• Diagnosis - Newborns with positive screens see medical specialists for a final determination.
• Management - Families and their infants receive ongoing care through a medical team.
• Education - Information and education are available to families and to providers.
• Evaluation - Advisory council oversees program/systems to ensure effectiveness/efficiency.