cardiac imageMy mom once told me that most people have to wait a lifetime to do something really remarkable…something that important, it would change their life or the lives of those near to them. I only had to wait four and a half years.

Kailin, 17, talking about her surgery to fix an Atrial Septal Defect (ASD)


The Heart Experience Journal is a collection of stories and personal experience from patients and families about their experiences living and coping with pediatric heart conditions. It represents the “collective wisdom” of these families as well as their health care providers.

The Heart Experience Journal was created by the Boston Children’s Hospital Department of Psychiatry and Heart Center. A group of parents and health care providers reviewed all contributions for safety and appropriateness.

Adolescent & Caregiver Stories:

The following stories were shared by patients and families for the original Heart Experience Journal published in 2000:

Many more stories from patients, families, and providers will be added here in Spring 2017. One of the stories is about Avery, who had surgery to repair an Atrial Septal Defect. Watch her family’s story below or read more on the Boston Children’s Hospital Thriving blog.

If you have any questions or concerns or would like to share your story with us, please email

or call Jennifer at 857-218-3754

Thank you for your interest in the Heart Experience Journal and we hope you visit again once it is done!