Organizations dedicate week to fundraising and awareness for disease

The week of Feb. 7-14 is dedicated as the annual Congenital Heart Defect Awareness Week. A time to raise awareness about the most common birth defect and a leading cause of birth-defect related deaths, congenital cardiology centers and national organizations alike dedicate the week in raising funds for continued research and education.

The American Heart Association lists congenital heart defects as heart abnormalities and not a disease. Because “congenital” means existing at birth, the term “defect” is more appropriate for the condition. A defect is created when the heart or blood vessels near the heart don’t develop normally before birth. Congenital heart defects are structural problems and there are at least 18 different and distinct recognized types of defects.

Normally, the heart has valves, arteries and chambers that circulate the blood, and when all of the chambers and valves work properly, the blood is pumped through the heart to the lungs for oxygen, back to the heart and out to the body to deliver the oxygen. Because congenital heart defects create abnormalities, the valves, chambers, arteries and veins can be malformed and impair the blood circulation pattern.

According to the Congenital Heart Information Network, CHD affects more than 1.8 million families in the United States and more than 40,000 babies every year. Defects can range in severity and cause a variety of health issues. From simple complications such as “holes” between chambers of the heart to more severe abnormalities such as a complete absence of one or more chambers or valves, the AHA states that having a CHD can increase the risk of developing other medical conditions. Those conditions include pulmonary hypertension, arrhythmias, infective endocarditis, anticoagulation and congestive heart failure.

Many defects are diagnosed in infancy, but because some are dif cult to detect, a diagnosis may not be made until later in childhood or even in adulthood. In severe cases, the CHD is detected the rst few months after birth, and some babies can even be blue or have very low blood pressure following their birth. Certain defects can cause breathing problems, dif culty with feeding and poor weight gain.

Although the exact cause of congenital heart disease is not known, researchers presume it is genetically related. Because of this, genetic counseling is often used in helping families understand the risks of CHD. The goal of genetic counseling is for adults who have a CHD to determine how likely it is their children will have one, according to the AHA. Even with some developments in research, the cause hasn’t been pinpointed and out of every 1,000 births, nine children will have some form of congenital heart disorder.

Diagnosing can include a multitude of tests such as an electrocardiogram or EKG, chest X-ray, an ultrasound of the heart and blood tests, and sometimes the initial results don’t provide adequate information for a diagnosis and further testing may be needed. For children, minor defects are often found during a routine check-up. However, if the heart problem is more severe, a pediatric cardiologist will be referred.

When it comes to treatment and care, the AHA states that not all cases require treatment and that some will only need to be observed or regularly visit their cardiologist. More signi cant defects may require surgery or cardiac catheterization. Because CHD can be present with other conditions, each one may need speci c treatment and medication. For more information about treatment options and caregiver advice, visit the American Heart Association website.

Congenital Heart Defect Awareness Week is an opportunity for support groups, national and local organizations and congenital cardiology centers to educate the public on the risk factors and impact of CHD. Little Hearts Inc. was founded in 1998 and serves as a resource for families affected by congenital heart defects to share their stories and help spread the word on the condition. They offer media packages and “awareness” kits to help educate the public on CHD. Other services include discussion boards and a parent matching program where families can get connected with others who have similar experiences in their area. Their mission is to provide hope through the support of its members and to raise money for continued research and awareness. To get involved or make a donation, visit www.littlehearts.org.