• Myths About Life with Congenital Heart Disease


    Given the heart’s vital role in supporting human life and health, it can be easy to assume that every congenital heart birth defect is serious and will limit that child’s prospects for a full life. On the contrary, many heart defects can be corrected or made significantly less severe through surgical and/or interventional procedures.

    Oftentimes, individuals with congenital heart disease may have encountered myths about limitations on day-to-day living. SecondsCount has compiled a list of common myths about congenital heart disease. Read on for the facts.

    Myth #1: Many children who are born with a heart defect do not survive to adulthood.

    Truth: Survival rates were low in past decades, but that is no longer true. According to the National Heart, Lung and Blood Institute, children who were born with congenital heart disease in 1950 had only a 20 percent chance of survival. Today, most children who are born with complex heart defects survive ­– and survive well – into adulthood. In fact, there are more adults currently living with congenital heart disease than children! The survival rates for people with congenital heart disease vary greatly based on the specific type of cardiac lesion. Please speak with your cardiologist about your, or your child’s, condition specifically.

    Myth #2: Congenital heart disease means you can’t have an active life.

    Truth: Try telling that to Olympic snowboarder Shaun White, who was born with tetralogy of Fallot, a serious form of congenital heart disease. Surgical correction of the condition has enabled him to be one of the world’s most accomplished athletes. Of course, not all children with congenital heart disease will be able to be that active, but many will. The goal is to have any child born with heart disease lead as active of a life as possible. After all, being active can be a part of leading a heart-healthy life. Please speak with your cardiologist about which specific activity restrictions, if any, pertain to you or your child.

    Myth #3: As a child, I had surgery or an interventional procedure to correct congenital heart disease, so now as an adult I am “fixed” or “cured.”

    Truth: While some patients will have surgery or an interventional procedure that will not require further procedures, many will require continuing follow-up and evaluation throughout their lives, even if they are doing quite well as an adult. Follow-up care into and throughout adulthood with a cardiologist who understands your form of congenital heart disease is still crucial in maintaining a healthy lifestyle.

    Myth #4: I have a pacemaker or implantable cardioverter defibrillator (ICD) and should not use or get near a microwave oven and other household electronics.

    Truth: Microwave ovens and other household appliances such as televisions, radios, electric blankets or can openers will not affect the operation of your pacemaker or ICD. Metal detectors for security and anti-theft systems in stores are unlikely to affect your device; however, it is advised that you not remain near them for longer than necessary. Please carry your pacemaker or ICD identification card with you at all times while traveling through an airport, and follow the specific instructions provided by airport security personnel when going through security screening. If you have additional questions about airline travel, you can contact your airline carrier for further instructions and advice.

    It is possible that headphones, because of the magnets they contain, may affect your pacemaker or ICD, so it is important that you not allow them to rest over the area in your chest where the device has been implanted. For questions about sources of interference with your device, be sure to speak with your physician or nurse. You can also contact the device manufacturer.

    Also, before undergoing any diagnostic test or medical procedure, make sure your treating physician at that time is aware that you have an implanted pacemaker or ICD.

    Myth #5: As a woman with congenital heart disease, I cannot have a safe pregnancy.

    Truth: Most women with congenital heart disease are able to have safe and normal pregnancies. However, there are some forms of severe congenital heart disease in which pregnancy carries very high and life-threatening risk. Before getting pregnant and throughout the pregnancy, you will want to work with a multidisciplinary medical care team who understands – and has experience working with – your form of congenital heart disease and any considerations for pregnancy. If you would like to start a family, it is important that you discuss this with your cardiologist before becoming pregnant (when possible). In some cases, treatment for your congenital heart disease may be recommended to improve the safety of pregnancy. Learn more about pregnancy and congenital heart disease here.