Trends in Survival Among Infants with Critical Congenital Heart Defects

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Mother holding her baby girl while the doctor listens to the baby's heart.

In 2013, the journal Pediatrics published a study: “Temporal Trends in Survival Among Infants with Critical Congenital Heart Defects.” You can read the article’s abstract here. See below for a summary of the findings from this article.

Main Finding from this Study

For infants with critical congenital heart defects (CCHDs), survival up to one year of life has improved over time. However, the chance of these infants dying is still high.

About this study

  • Why is this study important?
    Some babies born with a CCHD look healthy at first. They can be sent home with their families before their heart defect is found. In the first days or weeks of life, these babies can have serious problems and will often need emergency care. Screening for CCHDs soon after birth can identify some infants with these defects before they show any signs or problems. After they have been identified, these infants can be seen by heart doctors and receive the treatment they need. In 2011, the United States Secretary of Health and Human Services approved adding screening for critical congenital heart disease to the recommended list of health conditions that babies are checked for soon after birth (also known as newborn screening). To measure the effects of this screening, we will need to be able to compare survival rates of infants with CCHDs before and after screening becomes common. This study provides important information about survival of infants with CCHDs from 1979-2005, before screening started. This study also helps us to identify what factors affect survival.
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.

  • What were the study results?
    For this study, researchers used data from the Metropolitan Atlanta Congenital Defects Program (MACDP), which is a population-based tracking system for birth defects among babies born to residents of metropolitan Atlanta. This study looked at infants with heart defects born in Atlanta, Georgia from 1979-2005.
  • Over 1 million babies were born during that time period, of which about 7,000 were born with a congenital heart defect. Nearly 2,000 (about one-quarter) of these had a CCHD.
  • Among those without chromosomal anomalies or other birth defects, about 75% of those with a CCHD survived to one year of age. About 69% survived to 18 years of age.
  • Survival for infants with a CCHD improved over time. From 1979-1993, about 67% of infants survived to one year of life. Because medical care and treatment have gotten better over time, from 1994-2005, about 83% of infants survived to one year of life.
  • For babies with a CCHD, certain factors were related to a higher chance of death before one year of age:
  • if they were born earlier in the time period,
  • if they were diagnosed sooner after birth (which might be because they had a more severe defect),
  • if they had a younger mother, and
  • if they were born at a low birth weight.

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 and 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, surveyed 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.

Reference:

1. Oster ME, Lee KA, Honein MA, Riehle-Colarusso T, Shin M, Correa A. Temporal trends in survival among infants with critical congenital heart defects. Pediatrics. 2013;131(5):e1502-e1508

Reference for Key Findings Feature:

Oster ME, Lee KA, Honein MA, Colarusso T, Shin M, Correa A. Temporal Trends in Survival Among Infants with Critical Congenital Heart Defects. Pediatrics. 2013 [epub ahead of print].