12 Facts And Statistics About Congenital Heart Disease (Congenital Heart Defects)

Congenital heart defects are abnormalities in the heart structure that are present from birth. These can include having a hole in the wall of the hart, having leaky valves, and missing or having abnormally placed blood vessels or chambers of the heart. These are 12 facts and statistics you should know about congenital heart disease.

1. Congenital heart defects are common

Congenital heart defects are actually the most common type of birth defect. They occur in approximately one percent of all births. In fact, almost 40,000 babies in the United States are born with congenital heart disease every year. The incidence of congenital heart disease is almost as frequent as autism and 25 times more common than cystic fibrosis.

Studies estimate that two to three million people are living with congenital heart disease in the US, though there is no way of obtaining precise data. Additionally, between 100 and 200 newborns die every year due to an unrecognized heart disease.

2. Congenital heart defects are not universally fatal

Thanks to improvements in modern medicine, the number of people with coronary heart defects that live to adulthood keeps increasing and now, there are more adults than children who live with congenital heart defects. Studies have shown that more than 85 percent of babies born with a congenital heart defect live adulthood. This also means that people with congenital heart defects are living long enough now to develop adult illnesses, including obesity, high blood pressure and coronary heart disease. In fact, congenital heart defects are now the most common issue in pregnant women.

3. However, congenital heart defects are still a major cause of death

Congenital heart defects are the most common reason behind infant death due to birth defects. While significant strides have been made survival rates of patients with congenital heart defects, survival is still largely dependent on the severity of heart defects and those with more severe forms of the disease are less likely to live into adulthood.

4. Surgery is a common treatment for patients with congenital heart defects

An estimated 25 percent of children born with congenital heart defects will need some form of heart surgery or other medical interventions in order to survive. Unfortunately, surgery is not always a cure for congenital heart defects and many patients will continue to need surgeries and medicines into adulthood.

5. Congenital heart defects cause long-lasting effects

Even though the survival rate of patients with congenital heart defects is higher now than before, patients still continue to face a life-long risk of different health problems including growth delays, developmental delays, issues exercising, heart rhythm problems, heart failure, heart attacks, or strokes.

6. The causes of congenital heart defects are largely unknown

We still don’t know what causes the majority of congenital heart defects. We do, however, know that some genes contribute to about 15 to 20 percent of all congenital heart defects. Scientists postulate that most cases of congenital heart defects develop due to a combination of genetics, environmental exposures, and other maternal-specific conditions. Since the heart forms early on fetal development, damage to the heart may occur before women even realize that they are pregnant. As maternal obesity, smoking and certain infections are associated with a higher risk of congenital heart defects, it is important to prevent these risk factors during pregnancy.

7. Some environmental exposures are linked to the development of congenital heart disease

Some studies have shown a link between maternal environmental exposures — to things like specific foods, chemicals, and medications — and the development of congenital heart disease.

8. Some cases of congenital heart disease are genetic

Studies have shown that a baby's risk of congenital heart disease is three times higher if the mother, father, or a sibling also has congenital heart disease.

9. Congenital heart disease makes up a large proportion of healthcare costs

One study from 2009 found that children with congenital heart disease in the United States accounted for approximately 27,000 hospital stays, which totaled almost $1.5 billion dollars. During the same year, the cost of staying in a hospital for adults with congenital disease totaled $280 million and accounted for 12,000 hospital stays.

10. Having congenital heart disease can affect your finances

A large proportion of adults with congenital heart disease in the US report that they have problems accessing insurance and coverage due to their disease.

11. Patients with congenital heart have lifelong problems

One study showed that when compared to the general population, adults with congenital heart disease are three to four times more likely to have a higher rate of emergency room visits, hospitalization and stays in the intensive care unit (ICU).

12. Patients with congenital heart disease don’t receive the best care

Studies show that less than 10 percent of adults with congenital heart disease in the United States actually receive the recommended care, which is specialized care from an adult congenital heart disease center.