Healthy Congenital Heart Disease

A referral may be required by your insurance provider and some practices. In general, this referral supports the transfer of medical care to an appropriate provider, qualified in your child’s care, and supports a comprehensive hand-off of care.

After often a decade or two of providing care, your pediatric cardiologist and their staff may be just as emotionally attached to your child as you are to them. Cognitively, everyone recognizes the benefits and even the necessity of transferring care to an adult cardiologist who specializes in adult CHD, yet your pediatric healthcare provider may also have feelings of loss as your family transitions. They most likely would love to continue to receive holiday cards and pictures of your family. Think of them as a favored teacher as your relationship changes from care provider to trusted supporter.

Adult CHD problems are very different from other “regular”/acquired heart issues that adults develop. It is important to understand as much as you can about your CHD and any problems that it might cause you. Asking these questions of your healthcare provider are big steps in advocating for yourself and striving to live the most normal, healthy life possible.

• What is the name of my CHD and how do you describe it?
• What is my significant medical history, including any surgeries?
• What are my risks as an adult?
• How will I be able to identify any signs of new heart problems?
• What are my medications, their dosages, what is each medication for, and what does it do for me?
• What are the results of any diagnostic tests, medical procedures, and surgery for complex ACHD?
• What kind of exercise program should I be engaged in?
• What forms of birth control are safe—and can I become pregnant?
• Do I have any restrictions on my activities?
• What kind of diet should I be following?
• Do I need the flu or other vaccines?
• Do I need dental prophylaxis?

A complete medical record should be provided to your new healthcare provider that includes all office visit notes, all procedure, and test results, all medications and vaccinations, and all discharge records from all hospitalizations.