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Key Findings: Results From the New Jersey Statewide Critical Congenital Heart Defects Screening Program

In a previous article, CDC reported on the first 3 months of CCHD newborn screening in New Jersey. Read a summary of the findings here.

A new article in Pediatrics reviewed the first 9 months of critical congenital heart disease (CCHD) screening in New Jersey. This report includes information about how many babies were screened, babies who were reported to have failed the screening, and babies with CCHDs who were not detected through screening.  You can read the article’s abstract here. See below for a summary of the findings from this article.

Main Findings from This Study

About 73,000 infants were screened for CCHD in New Jersey. Screening identified 3 babies with CCHDs who, without screening, might not have been found before being sent home from the hospital.

  • 30 out of 49 babies failed the screening did not have signs or symptoms of a CCHD or a diagnosis made before birth. These babies would not have been checked for a CCHD if they had not been screened.
    • Of these babies:
      • 3 had a CCHD
      • 17 had other potentially serious problems (including other heart defects or echocardiogram findings)
      • 10 had no reported medical problems

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 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.

Important Information for State Newborn Screening and Birth Defects Tracking Programs

New Jersey’s experience of implementing statewide CCHD newborn screening highlights important factors to consider when examining the value of the program.  These factors include whether the baby’s heart defect was detected during pregnancy, whether the baby would have otherwise received a pulse oximetry measurement at the time of the screen, or whether an echocardiogram or visit with a heart specialist had already been planned before the usual screening time. Collection of pulse oximetry screening information on every New Jersey birth will further our understanding of this and other statewide, CCHD screening programs.

This study found that 48 babies were reported to the New Jersey Birth Defects Registry with a CCHD, without an accompanied failed screen result. These babies could have passed the screen, not been screened, or had a failed screen with the result not reported. Based on available information, the overwhelming majority of these babies experienced at least one of the following: their heart defect was detected during pregnancy, they were transferred out of the birthing hospital within 1 day of life, were being monitored with pulse oximetry, and/or had passing pulse oximetry screening results.

Read more information about newborn screening for CCHDs in New Jersey from New Jersey’s Department of Health.

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 for Key Findings Feature

Garg LF, Van Naarden Braun K, Knapp MM, et al. Results From the New Jersey Statewide Critical Congenital Heart Defects Screening Program. Pediatr. 2013 [epub ahead of print].