Children born with congenital heart defects (CHDs) are now living well into adulthood thanks to advances in surgical techniques and technology.  In fact, 9 out of 10 children born with a CHD will live into adulthood. Still, with the advances in technology and surgical procedures, individuals with CHDs require life-long monitoring and care by a cardiologist, even if their defect has been repaired.  Monitoring and care in adulthood may consist of taking medications, imaging the heart, or other exams or procedures. Depending on the type and severity of heart defect an individual has, this monitoring and care will help to identify and treat any potential issues that could arise, such as arrhythmias, an enlarged heart, leaky heart valves, heart failure, heart infections, or pulmonary hypertension.  However, according to the Adult Congenital Heart Association, a majority of individuals with CHD (~90%) are not getting the care that they need.

Learn about your condition

In some instances, some people may not know that they have a congenital heart defect until they are adults.  In other cases, some may know that they were born with a heart defect, but may not know the name or the type of surgery or treatments they had when they were younger.

If you do not know the specific details of your heart defect, there are things you can do to learn more about it. This includes:

• Figuring out the name of the heart defect
• Knowing if you had surgery, and if so, what surgery or surgeries were performed
• Knowing what medications you are currently on, and if possible, any medications you took in the past
• Understand how your heart is currently working

Ask people who may know more about your condition, such as your parents or other relatives, to find out more about your condition.  Also, find out where you may have received care or treatment when you were younger, such as your pediatric cardiologist, primary physician, or hospital and request the records from these places.  If you cannot find out any more information about your heart defect, your cardiologist may help you to figure out more.

Additionally, ask your heart doctor any questions you may have about your heart condition.  The American College of Cardiology provides the list of questions below which you may wish to ask:

• Can you tell me about my congenital heart disease?
• How often should I be seen for follow-up appointments?
• How often do I need to have an echocardiogram or other test?
• What is my risk for heart problems over time?
• Are there symptoms that I should watch out for?
• Will I need to have another procedure or repair?
• What types of exercise are best for me to do?
• Is there anything else I can do to stay healthy?
• Is it safe for me to get pregnant?
• Are there any resources that you recommend for people living with congenital heart defects?
• Should I worry about my children having a heart problem?
• Are there any support groups that I can get in touch with?
• Are there any financial resources to help pay for care?