Making sure you understand the diagnosis of congenital heart defects

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This page highlights how to ensure a diagnosis is completely understood. Asking questions to clarify the diagnosis is an acceptable and expected thing to do.

Key points

  • Doctors understand and expect that you will ask questions to clarify information about your child's condition.
  • It is necessary for you to understand your child's condition in order to make decisions about their treatment.
  • Write down medical information that the doctor tells you so you can refer back to it later.

Receiving an official diagnosis can feel overwhelming. Doctors and members of the healthcare team are there to answer your questions and explain your child's condition in detail.

It is important that you understand the diagnosis. If, after speaking with the doctor, you still don’t understand, be sure to ask again. Don't be embarrassed. Many conditions are quite complicated and need to be explained a few times.

Health care professionals are here to help. And if English is not your first language, the services of an interpreter can be arranged.

It is your right to be informed, and it’s essential that you are able to understand your child’s condition in order to make decisions about treatment. By fully understanding what’s going on, you’ll be more comfortable with what’s to come. The cardiologist has many patients to see and you may not always be able to get in touch with them. Your clinic nurse is a good contact and can help answer your questions.

To make sure you understand the diagnosis fully, don’t be afraid to ask questions. Some questions you could ask the doctor include:

  • What is the condition? (Be sure to write down the formal name.)
  • How is it affecting my child physically? (For a heart defect, for example, a drawing would be helpful.)
  • Where do we go from here?
  • What kind of treatment will my child need, and when?
  • Will you or another specialist provide the treatment?
  • Who else will be involved in my child’s care?
  • What can I do to help my child in the meantime?
  • What does the future hold?

Write down the information as the doctor discusses it with you. You may be overwhelmed and confused by the diagnosis, which makes it difficult to listen carefully. Having it written down means you can reflect on it later, once you’ve come to terms with the news.

You can also learn more about the condition by doing research about it at the library, gathering brochures and books from support organizations, exploring this and other reputable Web sites, and talking to people whose children have experienced something similar. Many people find that knowing more helps them cope with what is happening.

Last updated: December 14th 2009