Myths About Life With Congenital Heart Disease (CHD)

Overview

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 (CHD) may have encountered myths about limitations in day-to-day living. Read on to learn the truth about some common myths about CHD.

Myth #1: Many children born with CHD don’t survive into adulthood

Truth: Survival rates were low in past decades, but that’s no longer true. According to the National Heart, Lung, and Blood Institute (NHLBI), children born with CHD in 1950 had only a 20% 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 CHD than children. The survival rates for people with CHD vary greatly based on the specific type of cardiac lesion. Speak with your cardiologist about your or your child’s condition specifically.

Myth #2: Having CHD means you can’t have an active life

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

Myth #3: I had a procedure to correct CHD as a child. Now as an adult, I’m “fixed” or “cured”

Truth: While some patients will have surgery or an interventional procedure that won’t require further procedures, nearly all will require continued follow-up and evaluation throughout their lives, even if they are doing quite well as adults. Follow-up care into and throughout adulthood with a cardiologist who understands your form of CHD is still crucial in maintaining a healthy lifestyle.

Myth #4: If I have a pacemaker or implantable cardioverter defibrillator (ICD), I shouldn’t 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 won’t 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’s advised that you not remain near them for longer than necessary. Ensure you 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, contact your airline carrier for further instructions and advice.

It's possible that headphones, because of the magnets they contain, may affect your pacemaker or ICD, so it’s 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, speak with your doctor. You can also contact the device manufacturer.

Also, before undergoing any diagnostic test or medical procedure, ensure your treating doctor knows you have an implanted pacemaker or ICD.

Myth #5: As a woman with CHD, I can’t have a safe pregnancy

Truth: Most women* with CHD can have safe and normal pregnancies. However, there are some forms of severe CHD in which pregnancy carries a very high and life-threatening risk. Before getting pregnant and throughout the pregnancy, you’ll want to work with a multidisciplinary medical care team who understands—and has experience working with—your form of CHD and any pregnancy considerations. If you’d like to start a family, it’s important that you discuss this with your cardiologist before becoming pregnant (when possible). In some cases, treatment for your CHD may be recommended to improve the safety of pregnancy.

 

*The term “women” in the context of “women’s cardiovascular health” applies to individuals assigned female at birth (AFAB) who have a female biological reproductive system, which includes a vagina, uterus, ovaries, Fallopian tubes, accessory glands, and external genital organs.

*The term “men” in the context of “cardiovascular health” applies to individuals assigned male at birth (AMAB) who have a male biological reproductive system, which includes a penis, scrotum, testes, epididymis, vas deferens, prostate, and seminal vesicles.