Congenital Heart Defects

Questions to Ask Your Doctor

If you or your child has been diagnosed with a congenital heart defect, there are several key questions that you should ask your cardiologist during your next visit. Because congenital heart disease is a lifelong condition that needs regular follow-up visits, it’s critical to find a heart care team you trust and with whom can share concerns. Talk openly with your health care team about your or your child’s congenital heart disease. Here are some questions to help get you started: 

  • What is my/my child’s specific heart defect?
  • What does it mean for his or her life now and in the future?
  • I’ve heard some heart-related defects have been linked to learning and developmental delays. Is this something we need to be worried about? If so, who should we talk to about making sure my child is developing as expected?
  • How often should we have follow-up visits? What about lab or imaging tests?
  • What treatment is best taking into account my child’s age and specific condition?
  • Are there other measures we can take to help better manage the condition and prevent complications?
  • What is most important for me to teach my child about his or her condition?
  • When is the right time to start having these conversations?
  • Are there activities that should be avoided with this type of heart defect?
  • What else can I do to help care for my child?
  • When should he or she transition to an adult congenital heart disease specialist?
  • What should we know about our insurance coverage given that this is considered a pre-existing condition?
  • What is the name of my/my child's congenital heart defect and would you explain it to me?
  • What caused my/my child's congenital heart defect?
  • Should my blood pressure be taken in a specific arm?
  • Do I need to take antibiotics before going to the dentist?
  • What symptoms should I consider an emergency?
  • May I have a copy of my ECG to keep with me in case of an emergency?
  • Are there sports or activities that are dangerous for me or I should avoid?
  • What is my usual oxygen saturation? Why is this important?
  • Are there types of contraception that I should avoid?
  • Will my child require lifelong care for the congenital heart defect?
  • Does pregnancy put me at specific risk due to my congenital heart disease?
  • Where can I find more information about my/my child's condition?
  • How will the defect be fixed?
  • What can I expect for my child’s development and lifestyle as he/she grows?
  • Are there medications that we should avoid?
  • Is it OK to travel?
  • In an emergency, what do I tell EMS or the emergency room doctors/nurses?
  • Will I/my child always have to see a cardiologist?
  • Are there support groups for patients or families?
  • What are the risks that I will have other children with a heart defect?
Questions to Ask Your Doctor »

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