Racial/ethnic differences in survival of children with major birth defects in the United States, 1999-2007

A doctor holding a newborn baby

The Journal of Pediatrics has published a new study looking at the survival of babies with major birth defects in the United States using data from 1999-2007.  The study also compared survival across racial-ethnic groups.  Researchers found that for most types of birth defects, there were small to moderate differences in infant and early childhood survival between racial and ethnic groups. This study, one of the largest studies of survival among children with birth defects in the United States, provides important information for those involved in developing health policies and planning for services. For information specific to your child and your child’s prognosis, it is important to consult your healthcare provider.

You can read an abstract of the article here.external icon

Main Findings

  • For most birth defects studied, survival was poorer among babies born to non-Hispanic black and Hispanic mothers, compared to babies born to non-Hispanic white mothers.
    • Small to moderate differences in survival during the first 28 days of life were seen between racial/ethnic groups.
    • Compared to babies born to non-Hispanic white mothers,
      • survival from 28 days to 1 year of age was poorer among babies born to non-Hispanic black mothers for 13 of the 21 birth defects studied.
      • survival from 28 days to 1 year of age was poorer among babies born to Hispanic mothers for 10 of the 21 birth defects.
  • Children with hypoplastic left heart syndrome had the lowest chance of survival across multiple ages (up to 28 days of life, 1 year of life, 2 years of life, and 8 years), compared to children with any other birth defects studied.
  • For babies born with the birth defects listed below, their chances of survival up to 1 year of life was greater than 90%:
  • Future studies should examine survival among babies or children who needed surgery, those who had another condition requiring a hospital stay or other procedure, and those who had a severe or complex type of specific birth defects. Because medical care and treatment are improving, survival of babies with birth defects continues to improve over time. CDC and the National Birth Defects Prevention Network will work together to update these estimates in the future as data becomes available.
This table contains information on survival of babies and children with selected birth defects

Survival of babies and children with selected birth defects

Birth Defects

Chance of survival to age 1 a

Chance of survival to age 8 b

Central Nervous System Defects

Spina bifida without anencephalus

91.9%

90.2%

Encephalocele

72.1%

69.9%

Congenital Heart Defects

Common truncus

75.1%

71.5%

Transposition of great arteries

83.7%

81.0%

Tetralogy of Fallot

87.1%

84.6%

Atrioventricular septal defect (AVSD) (without Down syndrome)

71.0%

67.2%

Aortic valve stenosis

83.6%

81.5%

Hypoplastic left heart syndrome

55.2%

50.4%

Coarctation of the aorta

84.5%

81.8%

Orofacial Defects

Cleft palate without cleft lip

91.0%

90.3%

Cleft lip with or without cleft palate

91.6%

90.8%

Gastrointestinal Defects

Esophageal atresia/tracheoesophageal fistula

84.6%

83.8%

Pyloric stenosis

99.5%

99.3%

Rectal, anal and large intestinal atresia/stenosis

87.0%

86.1%

Musculoskeletal Defects

Upper limb deficiencies

89.3%

88.2%

Lower limb deficiencies

88.6%

88.2%

Diaphragmatic hernia

68.7%

68.0%

Gastroschisis

92.8%

92.1%

Omphalocele

71.4%

71.2%

Chromosomal Defects

Trisomy 21 (Down syndrome)

94.1%

92.8%

  • Children born in 1999-2007 from Arizona, Colorado, Florida, Georgia, Illinois, Massachusetts, Michigan, Nebraska, New Jersey, New York, North Carolina, and Texas.
  • Children born in 1999-2005 from Arizona, Colorado, Florida, Georgia, Massachusetts, Michigan, New Jersey, New York, North Carolina, and Texas.

About this Study

  • Researchers used data from 12 population-based birth defects tracking programs that included any of the 21 birth defects of interest. Population-based means that the researchers look at all babies with birth defects who live in a defined study area. The study covered about 39% of U.S. live births during the study period from 1999-2007.
  • The study group—children with any of the 21 birth defects of interest—included 98,883 children. Participating states were Arizona, Colorado, Florida, Georgia, Illinois, Massachusetts, Michigan, Nebraska, New Jersey, New York, North Carolina, and Texas.

About Birth Defects

Birth defects are common, costly, and critical conditions that affect 1 in every 33 babies born in the United States each year. Birth defects are structural changes present at birth that can affect almost any part or parts of the body (such as the heart, brain, face, arms, and legs). They may affect how the body looks, works, or both.

Our Work

CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) saves babies by preventing birth defects. NCBDDD identifies causes of birth defects, finds opportunities to prevent them, and improves the health of those living with birth defects. Learn how NCBDDD makes a difference by visiting https://www.cdc.gov/ncbddd/aboutus/saving-babies/index.html.

Key Findings Reference

Wang Y, Liu G, Canfield MA, Mai CT, Gilboa SM, Meyer RE, Anderka M, Copeland GE, Kucik JE, Nembhard WN, Kirby RS for the National Birth Defects Prevention Network. Racial/Ethnic Differences in Survival of United States Children with Birth Defects: A Population-Based Study. Journal of Pediatrics. 2015 [epub ahead of print]