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Key Findings: State actions to adopt newborn screening for critical congenital heart defects

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Infant with a pulse oximeter on its toe

Did you know? 43 states have taken action toward newborn screening for critical congenital heart defects. Read more.

CDC’s Morbidity and Mortality Weekly Report has published a new study looking at state actions to adopt newborn screening for critical congenital heart defects (critical CHDs) using pulse oximetry – a simple, non-invasive way to measure the amount of oxygen in a newborn’s blood. CDC researchers found that 43 states have taken action toward newborn screening for critical CHDs through legislation, regulations, or hospital guidelines. This report is the first assessment of state actions to adopt newborn screening for critical CHDs and state efforts to collect data about screening. States and hospitals might find this information valuable as they evaluate their efforts and seek to improve their newborn screening programs. You can read the article here.

Main Findings

  • Forty-three states have taken action toward newborn screening for critical CHDs through legislation, regulations, or hospital guidelines.
  • Of these, 32 states are collecting or planning to collect data about screening.
  • The type of data collected varies by state, and may include:
    • The total number of babies screened for critical CHDs in the state
    • The number of babies that pass or fail the screen
    • The oxygen levels of every newborn screened
    • The oxygen levels only for those newborns that failed the screen
    • A combination of these types of data

Data collection and reporting are essential to evaluate the effectiveness of newborn critical CHD screening.

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 (critical CHD, also known as critical congenital heart disease).1 Babies with a critical CHD need surgery or other procedures within the first year of life.

How can newborn screening help babies with critical CHD?
Some babies born with a critical CHD 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 critical CHD 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 critical CHD. Critical CHD screening has begun in most states, where laws requiring this screening have been proposed or passed.

Number of states first implementing legislation, regulation, or hospital guidelines for newborn screening for critical congenital heart defects by year (N=43) — United States, 2011-2014
Graph with the number of states first implementing screening by year. 2011 had 3. 2012 had 6. 2013 had 24. 2014 had 10.
State actions since newborn screening for critical CHDs was recommended in 2011*
State actions since newborn screening for critical CHDs was recommended in 2011.

*State actions as of December 2014
Text version of map

About this study

  • In 2011, the Secretary of Health and Human Services recommended that critical CHDs be added to the U.S. Recommended Uniform Screening Panel for newborns.The aim of this study was to assess state activities to establish newborn screening for critical CHDs and state efforts to collect data to evaluate screening.
  • Researchers worked with the American Academy of Pediatrics (AAP) Division of State Government Affairs and NewSTEPS, a program of the Association of Public Health Laboratories and the Colorado School of Public Health. NewSTEPS maintains a data repository of state newborn screening program metrics and provides education to programs.
    • AAP obtained information about newborn screening in each state from their state chapters.
    • NewSTEPS distributed a survey in January 2014 to assess newborn screening for critical CHDs and data collection practices in each state. The survey asked about legislation and data collection requirements at the state level. It also asked about the type of data collected.

Heart Defects: CDC’s Activities

The 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. CDC funds and coordinates the Metropolitan Atlanta Congenital Defects Program (MACDP).  CDC also funds 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. CDC funds projects to track CHDs across the lifespan in order to learn about health issues and needs among all age groups.
    3. CDC, in partnership with March of Dimes, surveys adults with CHDs to assess their health, social and educational status, and quality of life. The survey is called CH STRONG, Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG.
  2. Research: CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on large studies such as the National Birth Defects Prevention Study (NBDPS) (births 1997-2011) and the Birth Defects Study To Evaluate Pregnancy exposureS (BD-STEPS) (began with births in 2014). These studies are working to identify factors that put babies at risk 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 helps states and hospitals better understand the cost and impact of CCHD screening.   CDC also promotes collaboration between birth defects tracking programs and newborn screening programs to improve understanding of the effectiveness of CCHD screening.
    2. CDC provides technical assistance to the Congenital Heart Public Health Consortium (CHPHC). The CHPHC is a group of organizations uniting resources and efforts in public health activities to prevent congenital heart defects and improve outcomes for affected children and adults. Their website provides resources for families and providers on CHDs.

More Information

To learn more about congenital heart defects, please visit https://www.cdc.gov/heartdefects/.

To learn more about newborn screening for critical congenital heart defects, please visit https://www.cdc.gov/ncbddd/heartdefects/cchd-facts.html.

To learn more about the potential impact and cost-effectiveness of newborn screening for critical congenital heart defects, please visit: https://www.cdc.gov/ncbddd/heartdefects/features/keyfindings-cost-screening-cchd.html.

Key Findings Reference

Glidewell J, Olney RS, Hinton C, Pawelski J, Sontag M, Wood T, Kucik JE, Daskalov R, Hudson J. State legislation, regulations, and hospital guidelines for newborn screening for critical congenital heart defects—United States, 2011-2014. MMWR Morb Mortal Wkly Rep. 2015.

Additional References
  1. Reller MD, Strickland MJ, Riehle-Colarusso T, Mahle WT, Correa A. Prevalence of congenital heart defects in metropolitan Atlanta, 1998-2005. J Pediatr. 2008;153(6):807–813.
  2. Botto LD, Correa A, Erickson JD. Racial and temporal variations in the prevalence of heart defects. Pediatrics. 2001;107(3):E32.
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