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Rapid Implementation of Statewide Mandate for Pulse Oximetry Newborn Screening to Detect Critical Congenital Heart Defects—New Jersey, 2011

A newborn baby holding a red heart cutout

Morbidity and Mortality Weekly Report has published a new study: “Rapid Implementation of Statewide Mandate for Pulse Oximetry Newborn Screening to Detect Critical Congenital Heart Defects—New Jersey, 2011.” You can read the article here. See below for a summary of the findings from this article.

Main Finding from This Study:

New Jersey was the first state to pass a law and start a program where all licensed birthing hospitals are required to screen newborns for critical congenital heart defects. In the first three months of screening, about 98% of babies delivered were screened for critical congenital heart defects (CCHD). Through screening, hospitals found two newborns with CCHD, out of more than 25,000 babies screened. Without screening, these two babies’ heart defects might not have been found soon after birth.

Why is this study important?

Basics about Critical Congenital Heart Defects

What are critical congenital heart defects?
Congenital heart defects are the most common type of birth defect in the United States, affecting nearly 1% of―or about 40,000―births per year.  About 1 in 4 babies born with a heart defect has a critical congenital heart defect (CCHD, also known as critical congenital heart disease).1 Babies with a CCHD need surgery or other procedures within the first year of life.

How can newborn screening help babies with CCHD?
Some babies born with a CCHD appear healthy at first and can be sent home before their heart defect is detected. These babies are at risk of having serious complications within the first few days or weeks of life and often require emergency care. Newborn screening can identify some of these babies so they can receive care and treatment that can help prevent disability or early death.

Newborn screening for CCHD involves a simple bedside test to determine the amount of oxygen in a baby’s blood. Low levels of oxygen in the blood can be a sign of CCHD. CCHD screening has begun in some states, and laws requiring this screening have been proposed or passed in other states. You can see what is happening in your state here.

In 2011, New Jersey was the first state to pass a law and start a program where all licensed birthing hospitals are required to screen newborns for critical congenital heart defects.  State health officials in New Jersey requested help from CDC to assess this screening program. Laws on CCHD screening have been introduced or passed in at least 23 other states.

What were the study results?

  • In the first three months of screening, 98.2% of newborns born in birthing hospitals or centers in New Jersey were screened
  • 2 babies who failed screens were confirmed to have a CCHD
  • Researchers from CDC visited 11 out of 52 birthing hospitals in New Jersey
    • They picked 7 hospitals randomly
    • They picked 4 birthing facilities because these facilities had newborns who failed screening during the first 3 months of CCHD screening
  • All 11 hospitals included screening for CCHD in normal nursing care in their well-baby nurseries and neonatal intensive care units (NICUs)
  • Hospital nursing staff reported that:
    • Pulse oximetry was a familiar skill
    • Screening all newborns for CCHD was easily added to other routine tasks
  • All hospitals had methods for collecting and reporting screening results to the state health department and for reporting newborns that failed the screening to the New Jersey Birth Defects Registry
  • Hospitals reported that the process of sending screening results to the state health department took a medium amount of staff time and effort
  • Hospitals requested a form with detailed instructions about how to report differences between the number of live born babies and number of babies screened
  • States considering adding newborn screening for CCHD should develop methods for collecting and reporting data from CCHD newborn screening

Heart Defects: CDC Activities

Centers for Disease Control and Prevention (CDC) works to identify causes of CHDs and ways to prevent them. We do this through:

  1. Surveillance or disease tracking:
    1. State programs: CDC funds and coordinates the Metropolitan Atlanta Congenital Defects Program (MACDP).  CDC also funds 14 population-based state tracking programs. Birth defects tracking systems are vital to help us find out where and when birth defects occur and whom they affect.
    2. Adolescents and adults: CDC recently started 3 projects to track congenital heart defects among adolescents and adults in order to learn about their health issues and needs across the lifespan.
  2. Research: CDC funds a large study of birth defects called the National Birth Defects Prevention Study. This study is working to identify risk factors for birth defects, including heart defects.
  3. Collaboration:
    1. CDC is assessing states’ needs for help with CCHD screening and reporting of screening results. CDC worked with New Jersey and Georgia to assess their ability to track CCHD screening. CDC is also helping states and hospitals to better understand how much hospitals spend for each baby screened.
    2. CDC promotes collaboration between birth defects tracking programs and newborn screening programs for CCHD screening activities. State birth defects programs collect data on CHDs and could help evaluate the effectiveness of screening by looking at false positives (babies who failed the CCHD screening but do not actually have a CCHD after further evaluation) and false negatives (babies who passed the screen suggesting there was no CCHD but actually did have a CCHD).
    3. CDC provides technical assistance to the Congenital Heart Public Health Consortium and to states receiving funding from the Health Resources and Services Administration (HRSA) for CCHD screening activities.

Reference:

1. Oster M, Lee K, Honein M, Colarusso T, Shin M, Correa A. Temporal Trends in Survival for Infants with Critical Congenital Heart Defects. Pediatrics. 2013. (In Press).

Reference for Key Findings Feature

Centers for Disease Control and Prevention. “Rapid Implementation of Statewide Mandate for Pulse Oximetry Newborn Screening to Detect Critical Congenital Heart Defects—New Jersey, 2011.”  MMWR 2013; 62:292-294.

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