Data and Statistics

Prevalence

Babies born with heart defects

Heart defects affect nearly 1% of―or about 40,000―births per year in the United States.^{[1, 2]}

The prevalence of some heart defects, especially mild types, is increasing. The prevalence of other types has remained stable. The most common type of heart defect is a ventricular septal defect.^{[3, 4]}

About 1 in 4 babies with a heart defect have a critical heart defect. ^[5]Infants with critical heart defects generally need surgery or other procedures in their first year of life.

The prevalence of all types of heart defects, including critical heart defects, varies by state and by type of defect.^[6]

Note: Prevalence refers to the number of babies born with heart defect compared to the total number of births.

Children and adults living with heart defects

Several methods have been used to estimate the total number of children and adults with heart defects in the United States.

To date, CDC researchers have found that

• In 2010, about 1 million children and 1.4 million adults were living with a heart defect.^[7]
• In 2010, 1 in 250 to 1 in 59 children and teens were living with a heart defect.^[8]

In addition, between 2011 and 2013,

• 1 in 157 children ages 1-10 years and
• 1 in 680 adolescents and adults ages 11-64 years

had a heart defect noted in their health record at a medical visit.^[9]

Heart defect-related deaths

Heart defects are a leading cause of birth defect-associated infant illness and death.^[5]

Infant deaths due to heart defects often occur when the baby is younger than 28 days old. The first 28 days of life is sometimes called the neonatal period. In a study of neonatal deaths, 4.2% of all neonatal deaths were due to a heart defect.^[10]

During 1999–2017, about 1 in every 814 deaths were attributable to heart defects in the United States. Nearly half (48%) of the deaths due to heart defects occurred during infancy (younger than 1 year of age).^[11]

Survival

Survival of infants with heart defects depends on^[5]

• Severity of the defect
• Timing of diagnosis
• Treatments
• Presence of other conditions

Through infancy

One-year survival:^[5]

• About 97% for babies born with a non-critical heart defect
• About 75% for babies born with a critical heart defect

Survival and medical care for babies with critical heart defects are improving. One-year survival for infants with critical heart defects improved from about 67% during 1979-1993 to about 83% during 1994-2005.^[5]

Through adolescence

• About 95% of babies born with a non-critical heart defect are expected to survive to at least 18 years of age.^[5]
• About 69% of babies born with a critical heart defect are expected to survive to at least 18 years of age.^[5]

Through young adulthood

• Overall, about 81% of babies born with heart defects are expected to survive to at least 35 years of age.^[12]
• After the first year of life, about 93% of one-year-olds with a heart defect are expected to survive to at least 35 years of age.^[12]

Survival to young adulthood is still lower for people with heart defects than the general population. The complexity of their defect, presence of other birth defects and birthweight might impact their survival to young adulthood. In addition, CDC researchers found that a mother's race and ethnicity might have contributed to survival. Therefore, factors such as access to care, systemic racism, and implicit bias may contribute to survival to young adulthood.

Illness and disability

Children

Compared to children without a heart condition, children with a heart condition were more likely to have special healthcare needs. These needs may include medication needs, physical or speech therapy, and treatment for developmental or behavioral problems. Nearly 60% of children with a heart condition have special healthcare needs, compared to 20% of children without a heart condition.^[13]

Children and teens with heart defects commonly have other birth defects, problems with breathing, mental health issues, and other heart problems. Teens with more severe types of heart defects are more likely to be admitted to the hospital for care.^[8]

Children with CHD are about 50% more likely to receive special education services compared to children without birth defects.^[14]

The occurrence and severity of a developmental disability or delay increases with how complex the heart defect is.

Adults

Adults living with heart defects are more likely than the general population to report additional cardiovascular issues. Examples of these issues are heart failure and stroke.^[15]

Adults with heart defects are more likely to have a disability than adults without heart defects. About 4 in every 10 adults with a CHD have a disability. Cognitive disabilities (trouble concentrating, remembering, or making decisions) are the most common type.^[16]

Cost

In 2019, hospital costs for individuals living with heart defects in the United States exceeded $9.8 billion.^[17]

In addition to medical costs to care for heart defects, families of children with heart defects can face costs, such as:^[18]

• High out-of-pocket expenses
• Financial problems
• Greater care-giving hours
• Quitting or reducing hours at work to care for their child
• Decreased mental health