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Abstract

Survival Survival of infants with CHDs depends on how severe the defect is, when it is diagnosed, and how it is treated. [Read summary ] About 97% of babies born with a non-critical CHD are expected to survive to one year of age. About 95% of babies born with a non-critical CHD are expected to survive to 18 years of age. Thus, the population of people with CHDs is growing. About 75% of babies born with a critical CHD are expected to survive to one year of age. About 69% of babies born with critical CHDs are expected to survive to 18 years of age. Survival and medical care for babies with critical CHDs are improving. Between 1979 and 1993, about 67% of infants with critical CHDs survived to one year. Between 1994 and 2005, about 83% of infants with critical CHDs survived to one year. Illness and Disability At least 15% of CHDs are associated with genetic conditions. About 20% to 30% of people with a CHD have other physical problems or developmental or cognitive disorders. Children with CHD are about 50% more likely to receive special education services compared to children without birth defects. The occurrence and severity of a developmental disability or delay increases with how complex the heart defect is. For example, more than 80% of individuals with a mild CHD have no developmental disabilities. However, more than half of those with a more critical type of CHD have some form of disability or impairment. Guidelines for screening, diagnosing, and managing developmental disabilities or delay in children with CHDs have been developed. [Read summary ] Parents of children with special healthcare needs with heart problems commonly report that their children's condition prevents them from doing things other children do. Parents reported that these children experience more diculty with learning, concentration, communication, self-care, and ne and gross motor skills than children with special healthcare needs without heart problems. These children also missed more days of school and participated less in extracurricular activities than children with special healthcare needs without heart problems. [Read summary ] Compared to children without a heart condition, children with a heart condition were more likely to have special healthcare needs, including medication needs, physical or speech therapy, and treatment for developmental or behavioral problems. Nearly 60% of children with a current heart condition have special healthcare needs, compared to 20% of children without a heart condition. [Read summary ] Costs In the United States, hospital costs for the population of individuals with cardiovascular defects in 2013 were about $6.1 billion. Critical congenital heart defect-associated hospitaliza tions had the highest mean and median cost of the birth defect categories considered ($79,011 and $29,886, respectively). [Read summary [265 KB / 6 pages] ] Pediatric hospitalizations with CHDs accounted for approximately $5.6 billion in hospital costs, representing 15.1% of costs for all pediatric hospitalizations in 2009. Hospitalizations with critical CHD accounted for 26.7% of all costs for CHD hospitalizations, with hypoplastic left heart syndrome, coarctation of the aorta, and tetralogy of Fallot having the highest total costs. [Read summary ] In addition to the medical costs of care for CHDs, families of children with CHDs can face other costs, such as high out-of-pocket expenses, nancial problems, greater care-giving hours, quitting or reducing hours at work in order to care for their child, and decreased mental health. [Read summary ]