Assessing Pregnancy, Gestational Complications, and Co-morbidities in Women With Congenital Heart Defects (Data from ICD-9-CM Codes in 3 US Surveillance Sites).

Abstract Improved treatment of congenital heart defects (CHDs) has resulted in women with CHDs living to childbearing age. However, no U.S. population-based systems exist to estimate pregnancy frequency or complications among women with CHDs. Cases were identified in multiple data sources from three surveillance sites: Emory University (EU) whose catchment area included five metropolitan Atlanta counties; Massachusetts Department of Public Health (MA) whose catchment area was statewide; and New York State Department of Health (NY) whose catchment area included 11 counties. Cases were categorized into one of five mutually exclusive CHD severity groups collapsed to severe vs. not severe; specific ICD-9-CM codes were used to capture pregnancy, gestational complications, and non-gestational comorbidities in women, age 11-50 years, with a CHD-related ICD-9-CM code. Pregnancy, CHD severity, demographics, gestational complications, comorbidities, and insurance status were evaluated. ICD-9-CM codes identified 26,655 women with CHDs, of whom 5,672 (21.3%, range: 12.8% in NY to 22.5% in MA) had codes indicating a pregnancy. Over three years, age-adjusted proportion pregnancy rates among women with severe CHDs ranged from 10.0%-24.6%, and 14.2%-21.7% for women with non-severe CHDs. Pregnant women with CHDs of any severity, compared to non-pregnant women with CHDs, reported more non-cardiovascular comorbidities. Insurance type varied by site and pregnancy status. These U.S. population-based, multi-site estimates of pregnancy among women with CHD indicate a substantial number of women with CHDs may be experiencing pregnancy and complications. In conclusion, given the growing adult population with CHDs, reproductive health of women with CHD is an important public health issue.