New Study Findings: Factors Related to Late Detection of Critical Congenital Heart Defects

The journal Pediatrics has published a new study that looks at factors that might be related to late detection of 12 types of critical congenital heart defects (CCHD). Late detection of a CCHD means the baby received a CCHD diagnosis after going home from the birth hospital. CDC researchers and partners found that the level of nursery care at the birth hospital and the type of heart defect might be linked with late detection. Newborn screening for CCHD might increase the timely detection of these conditions in babies born at hospitals with basic nurseries. These findings might be useful to states that are considering newborn screening for CCHD. You can read the article’s abstract here.

Main Findings from this Study

• Almost 1 in 4 babies with a critical congenital heart defect (CCHD) were diagnosed after the newborn was sent home from the birth hospital (these diagnoses were called “late detection”).
• Babies born in hospitals with lower level nurseries were more likely to have late detected CCHD compared to babies born in hospitals with a Level 3 nursery. The level of the nursery refers to the level of care it can provide newborn babies. Level 1 and Level 2 nurseries in hospitals provide basic care. Level 3 nurseries provide the most comprehensive, specialized care. About 1 in every 3 babies with a CCHD born in hospitals with only Level 1 nurseries were diagnosed late. In contrast, only 1 in 5 babies with a CCHD born in hospitals with Level 3 nurseries were diagnosed late.
• The frequency of late detection also varied by the type of heart defect that the baby had.

• 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.

• Compared with babies diagnosed with CCHD before going home from the birth hospital, babies who were diagnosed with CCHD after being sent home from the birth hospital were more likely to be born:
  • To mothers who were younger than 25 years old
  • To mothers who with a high school education or less
  • To mothers born in the United States
  • Full term (37 weeks of pregnancy or more)

About this Study

Researchers used data on infants with 12 CCHD types identified by the Florida Birth Defects Registry. Hospital records for these babies were examined to see if certain factors were related to late detection (CCHD diagnosis after going home from the birth hospital).

More Information

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

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

Key Findings Reference

Dawson AL, Cassell CH, Riehle-Colarusso T, Grosse SD, Tanner JP, Kirby RS, Watkins SM, Correia JA, Olney RS. Factors Associated with Late Detection of Critical Congenital Heart Disease in Newborns. Pediatrics. 2013. [epub ahead of date]

Heart Defects: CDC Activities

Centers for Disease Control and Prevention (CDC) identifes 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 funded 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 identifies 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 who 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].