According to the Centers for Disease Control and Prevention, one in 110 children are born with a Congenital Heart Defect (CHD)—the most common birth defect. In comparison, the odds of a child developing cancer by the age of 19 is approximately one in 330. And sadly, more children die from CHD than children with all types of cancers combined.
CHDs affect the structure and function of the heart, including holes inside the heart’s walls and narrowed or leaky valves. In more severe forms of CHD, blood vessels or heart chambers may be missing, poorly formed, or in the wrong place. There are many types of congenital heart defects, ranging from those that pose a relatively small threat to the health of the child to those that require immediate surgery. And, there is no cure for CHD.
Some CHDs are found during the 20-week ultrasound or by a fetal echocardiogram. After birth, CHD is often first detected when the doctor hears an abnormal heart sound or heart murmur when listening to the heart. Pulse Oximetry Screening, which measures oxygen levels in a baby’s blood at birth, also helps diagnose undetected CHD.
There are other warning signs for CHD in infants and children. According to the Mayo Clinic, symptoms include rapid breathing, pale gray or blue skin color, swelling in the legs, abdomen or areas around the eyes, shortness of breath during feedings leading to poor weight gain, and tiring easily during activity.
Heart kids are superheroes. They are born into a life with many limitations due to their cardiac conditions. Yet, this is the only life they know. They may not be able to play sports because of a compromised immune system. They must practice social distancing and isolation protocols to protect themselves. They know that they may have a shortened life expectancy. For all of these reasons, heart kids do not take life for granted and live to have fun. They make their own normal. And we want to help them feel normal, in a not-so-normal world.