cardiac imageMy mom once told me that most people have to wait a lifetime to do something really remarkable…something so 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 having surgery to fix an atrial septal defect (ASD)


The Heart Experience Journal is a collection of stories and personal experiences from patients and families about 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. The Heart Experience Journal was originally created in 2000 and was recently updated in 2017.

Child & Adolescent Stories:

Learn more about the group of kids, teens, and young adults who contributed to the Heart Journal.

At 16 months old, Avery was diagnosed with an atrial septal defect (ASD) that required open-heart surgery to repair. ​ Click on the video to watch her family’s story.

Caregiver Stories:

Learn more about the group of caregivers who contributed to the Heart Journal.


Read more about Ethan’s journey with congenital heart disease by clicking on the picture. This story is shared in the Heart Journal and Bereavement Journal.


Stories from the original Heart Journal published in 2000:


Clinician Insights

Meet the group of Heart Center Clinicians who contributed to the Heart Journal.