Living With Congenital Heart Disease

Many children born with heart problems face challenges, including other health problems that need to be managed. Here are some tips to help you and your child along the way.

1. Find a heart team with expertise in managing congenital heart disease.
   In most cases, your child will need lifelong monitoring and care, even if he or she feels well. Your daughter will, at some stage, need to understand the risks of pregnancy and the need for careful planning and monitoring.
2. Understand your child's heart defect and ask lots of questions.
   Find out what it means for your child's health now and in the future. Learn about what your child should do to stay healthy and prevent complications.
3. Stay organized.
   Keep a complete and easy-to-follow summary of:
   
   • The type of heart defect and when it was first diagnosed.
   • Every test, procedure and surgery performed, along with dates and the name of the ordering doctor and facility.
   • Medications your child took in the past and takes now, and for what purpose.
   • Results from cardiac imaging or blood tests.
   • Other conditions, such as allergies.
   • Follow-up appointments or upcoming echocardiogram or other tests.
4. Don't skip health checkups or tests.
   Even if your child seems to be doing well, follow-up doctor visits are key to staying ahead of any problems. As your child moves into adulthood, they will need to continue to have regular follow-up.
5. Speak up if you have concerns about medical costs.
   Ensuring financial security is important for follow-up care. Please make sure to request a social worker or case management assistance early in the process if you need additional support. They can work with you to find options to help lower costs.
6. Lifelong congenital cardiac care is essential.
   It will be important for your child to find the right team at each stage of life and to feel confident in the team's understanding of the specific defect and how to manage it. This includes readying your child to transition to an adult congenital heart specialist when the time is right.
7. Empower your child to learn about their heart condition and become resilient.
   As you and your child go through medical appointments, it is important to reinforce the idea that this heart condition does not define them. Empower your child to be open about how they feel and to communicate this in a timely manner. Forming respectful and close relationships with their heart team and health care professionals will set the foundation for good communication. As a parent, it's important to encourage resilience.
8. Help your child adopt heart-healthy habits early on.
   This includes eating well, getting appropriate exercise, not smoking, and managing and reducing stress.
9. Learn how to manage the anxiety that often comes with having a heart defect.
   Anxiety and feelings of uncertainty are very common among people with congenital heart disease. It affects families too. Developing coping strategies early in life is important.
10. Find emotional support.
    Living with a chronic disease, especially from birth, can be stressful. Make sure to tap into support groups or find families who have a child with a similar condition to talk to and share experiences.
11. Stay positive and keep an open mind.
    More adults are living with congenital heart disease than ever before, thanks to significant medical advances. Technologies and treatments are continually improving, so for many, the future is bright.

If you are an adult with congenital heart disease, we have more tips.