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Key Findings: How important is timely detection of Critical Congenital Heart Defects?

Newborn baby, ready for CCHD screening

Newborn baby, ready for CCHD screening

The journal Birth Defects Research (Part A) has published a population-based study looking at the potential financial effects of detecting more babies with critical congenital heart defects (CCHD) at birth hospitals through newborn screening. CDC researchers found that hospital costs for babies with CCHD may be lower if these babies are detected before birth hospital discharge. These findings might be useful for states that are considering newborn screening for CCHD. You can read the article’s abstract here.

Main Findings from This Study

Timely detection (before birth hospital discharge) of CCHD may lead to lower hospital costs.

  • In this study, 23% of babies with CCHD were diagnosed after they were discharged from the birthing hospital (late detection).
  • Compared with babies with timely CCHD detection, in their first year of life babies with late CCHD detection had
    • 52% more hospital admissions,
    • 18% more days spent in the hospital, and
    • 35% higher hospital costs.

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.

  • 20% of babies with timely detected CCHD and 8% of babies with late detected CCHD died during their first year of life. The higher percentage of deaths among infants with timely detected CCHD is likely due to there being more severe defects among these infants compared to those with late detected CCHD.
  • At least 1 in 200 babies with CCHD died in circumstances that might be avoided in the future if all babies are screened. These babies died soon after discharge from their birth hospital stay—where they did not receive a CCHD diagnosis—either outside a hospital or within three days of an emergency re-hospitalization.

About this Study

Researchers used data on infants with CCHD identified by the Florida Birth Defects Registry. Hospital records for these babies were examined to find out whether late detection (diagnosis after birth hospital discharge) was linked with more or longer hospital stays during infancy compared to timely detection.

More Information

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

To learn more about screening for critical congenital heart defects, please visit http://www.cdc.gov/ncbddd/pediatricgenetics/CCHDscreening.html.

Key Findings Reference

Peterson C, Dawson A, Grosse SD, Riehle-Colarusso T, Olney RS, Tanner JP, Kirby RS, Correia JA, Watkins SM, Cassell CH. Hospitalizations, costs, and mortality among infants with critical congenital heart disease: how important is timely detection?. Birth Defects Res Part A Clin Mol Teratol 2013 [epub ahead of date]

Heart Defects: CDC Activities

Centers for Disease Control and Prevention (CDC) works to identify causes of congenital heart defects (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.

References:

  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. [epub ahead of print].
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