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.
The Pediatrician's Role in Newborn Screening Contingency Planning
Establishing partnerships among pediatric and public health leaders is an ideal way to improve state-level preparedness for children. The American Academy of Pediatrics (AAP) offers a Pediatric Preparedness Resource Kit to help pediatricians, public health leaders, and others to assess what is already happening in their community or state, and help determine what needs to be done before an emergency or disaster. Pediatricians and other clinicians who care for children can take steps to ensure that newborn screening is maintained in an emergency or disaster. Efforts can be targeted towards state-level preparedness planning or strategies that can be implemented with a pediatric office practice.
Talking to Families about Newborn Screening
Communication between a pediatrician and his/her patient's family is important in ensuring that the family understands and is ready to help when necessary. Research shows that when physicians talk to families about preparedness, they are much more likely to take action. This can be done by:
- Partnering with an Obstetrician to explain the normal screening process to families that are expecting a baby and possible ways that an emergency or disaster could disrupt this.
- Discussing how families might know if the screening process has been disrupted and what they can do if this occurs.
- Providing details on how families will receive their screening results. Explaining the importance of having back-up/copies of the results.
- Discussing ways the family can follow-up during the screening process, why this is beneficial, and ways to do this during an emergency.
- Providing families with written handouts or educational materials to ensure they are prepared.
After a disaster, children and families may experience post-event adjustment reactions, including stress, depression, anxiety, regression, somatic symptoms, bereavement, or post-traumatic stress disorder. Pediatricians are encouraged to take time to ask families how they are coping and offer reassurance and guidance, with a referral to a counselor or mental health professional as needed.
Preparedness for Pediatric Practices: Newborn Screening in Emergencies
To assist pediatricians in expanding their office preparedness plans to include contingency planning for interruptions in the newborn screening process, the AAP and the CDC worked together to create the "Preparedness for Pediatric Practices: Newborn Screening in Emergencies" handout. This handout details the newborn screening process and why contingency planning for newborn screening is important during emergencies. For more information, or to order complimentary copies of the handout, e-mail DisasterReady@aap.org.
AAP Information on Newborn Screening
Baby's First Test Information for Health Professionals
CDC Grand Rounds: Newborn Screening and Improved Outcomes (MMWR Article August-September 2011)
Emergency Preparedness for Newborn Screening and Genetic Services
EQIPP: Newborn Screening: Evaluate and Improve Your Practice
Hearing Loss in Children - Recommendations and Guidelines (CDC)
National Center for Medical Home Implementation
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)
Promoting Adjustment and Helping Children Cope (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 and Contact Information