Every year in the United States, about 4 million babies are born and each newborn is required to have certain screening tests. Of these 4 million newborns, about 12,500 were identified as having treatable diseases. Newborn screening systems identify congenital conditions that, if not detected and treated early, could result in catastrophic health consequences, including death.
In the midst of an emergency or disaster, the newborn screening process can quickly become disrupted and cause issues in detecting and treating these preventable diseases. Pediatricians can and should work with public health and other leaders in their states to prepare for disasters and ensure that newborn screening services are maintained to the extent possible in a disaster situation.
During an emergency, newborn screening can be disrupted if there is a breakdown in communication involving any of the following: hospital, health department, laboratory, pediatrician's office or the baby's parents. Problems can also occur if there is damage to laboratory equipment, shortage of testing materials, improper storage of specimens or delays with the mailing or shipping systems.
After Hurricane Katrina, a survey revealed that the newborn screening process was disrupted for all Louisiana hospitals in the disaster areas. Issues such as breakdown of communication, closings of hospitals, power outages and trouble mailing samples were all factors that impeded the newborn screening process. It was estimated that about 20% of the laboratory specimens related to newborn screening were not received. It was challenging to determine whether newborn screening had occurred and if the laboratory specimens were received and processed. If screening did occur, it was challenging to know whether the results were shared with the child's medical home and if treatment was provided.
Prompted by the disruption to Louisiana's newborn screening program and many other factors, the Newborn Screening Saves Lives Act was enacted. This law directed the Centers for Disease Control and Prevention (CDC) to develop a national plan in consultation with the Health Resources and Service Administration and state health departments, and to put in place a newborn screening contingency plan for use by state, region or consortia of states in the event of a public health emergency. The Newborn Screening Contingency Plan (CONPLAN) was released in 2010. These efforts reinforce the importance of developing a contingency plan for newborn screening before an emergency or disaster. When contingency plans are created and followed during emergencies, newborn screening can continue and newborns can be protected.
- Hearing Loss in Children - Recommendations and Guidelines (CDC)
- National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaborative
- Newborn Screening (CDC)
- Newborn Screening Information (NIH/National Library of Medicine)
- Preparedness Checklist for Pediatric Practices (AAP)
- Helping Children Cope and Adjust After a Disaster (AAP)
- Quality Report: Improving Newborn Screening Follow-up in Pediatric Practices: Quality Improvement Innovation Network (AAP)
- Screening for Critical Congeital Heart Defects (CDC)
State Newborn Screening Program Services:
American Academy of Pediatrics