Congenital Heart Defects

Your Responsibilities

Congenital heart defects are the most common birth defect. Managing your condition requires your active participation in the lifelong care you receive. Make your health a priority.

Here are some ideas to help protect your cardiovascular health:

  1. Learn about your condition. This is an essential first step to a healthier heart—both now and in the future. The more you know about your condition and how to manage it, the better you will feel. You may be bombarded with information and advice from your health care team, especially when you are first diagnosed or if your treatment needs to be changed for some reason. Don’t be sheepish about asking your health care provider to repeat or explain anything that is unclear to you. You can also explore CardioSmart.org to learn more. Each condition center provides medical information, the latest research, questions to ask, and much more.

  2. Understand why congenital heart disease patients need specialized care. Congenital heart disease patients have different anatomies and functions than patients with “normal” hearts. CHD is not cured with surgery and in patients who have moderate or complex congenital heart disease, patients will require specialized care for life.  Adolescents or young adults with congenital heart disease should talk with their pediatric cardiologist about what specialty care is needed.  Adolescents or young adults with congenital heart disease should talk with their pediatric cardiologist about what specialty care is needed and ask about a referral to an adult congenital heart disease provider. This is particularly important if you are a CHD patient relocating for college or a job.  A national directory of adult congenital heart disease clinics can be found at the Adult Congenital Heart Association.

  3. Keep all medical appointments and be prepared. Your doctor will want to see you on a regular basis to monitor your health. Even if you feel better or have other demands on your time (work, family, etc.), you need to make these visits a priority. Make the most of each visit by using CardioSmart’s Preparing for Your Appointment page.

  4. Follow your treatment plan. No matter what your condition or treatment, it’s important to follow your doctor’s advice. It’s the only way that you and your health care team will know if the treatment is working or if changes are needed.

  5. Take your medications exactly as directed. Many people living with heart disease take medications to prevent problems and/or feel better. But in order for these medications to work, you must take them correctly.

  6. Here are a few other tips to keep in mind:

    • Take the time to understand why your doctor prescribed a specific medicine. You’ll feel better about taking the medication if you know why it is needed and how it can help.
    • Ask your doctor about side effects and how best to manage them.
    • Never stop, skip or change the amount (dose) of medication you take without talking with your doctor first.
    • Keep a current list of all medications you take, including any over-the-counter medications, herbal remedies and dietary supplements. Share this list with your health care providers at each visit.
    • Remember, too much medicine—or not enough—or taking certain medications or supplements together can be dangerous.

  7. Lead a healthier life. Although congenital heart disease is not treated by diet or exercise, a heart healthy lifestyle is still important.  Appropriate weight, activity and heart healthy habits will benefit CHD patients.

    • Be physically active. Talk with your health care provider about a regular exercise program that is appropriate for your condition and fitness level. Remember, activities like gardening, riding a bike or cleaning the house count as activity.
    • Eat well. Make smart,heart-healthy food choices. That means eating a diet rich in fruits, vegetables and whole grains and cutting down on saturated, trans and other types of fats.
    • Talk with your doctor about the risks of drinking alcohol with your condition.
    • Don’t smoke.
    • Maintain a healthy weight.

  8. Know what might increase your chance of having problems. Make sure that you and your health team are aware of your risk factors—those things that make it more likely for you to have heart disease, stroke or repeat cardiac events.

  9. Try to relax. Prolonged stress and anxiety can affect your body and your heart. Take care of yourself and try to lower stress levels by setting limits, getting a massage, signing up for a yoga class, meditating or engaging in other activities that help you to relax.

  10. Enlist help. Managing a chronic (or ongoing) condition can take a lot out of you. There will be good and bad days. Joining a support group, talking openly with family and friends or keeping a journal can help you cope. Don’t be afraid to seek professional help if needed. Consider bringing a family member or trusted friend to your doctor visits, especially if you have a complicated condition.

  11. Take heart. Remember that you’re not alone. Congenital heart disease is our nation’s number one birth defect. The good news is that major advances in treatments have been made, so treatments are better than ever before. There is also much greater awareness, support and resources to help you along your journey.

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