Our Stories: Living with Heart Defects
Ages Prenatal - 24 years
The true experts on any disease are the people who live with it. All of us can learn from people living with congenital heart defects (CHDs), as they share their experiences, their dreams, and their wisdom. Here are some patient voices that help illuminate experiences with heart defects. Are we missing your favorite book or website? Let us know! Email cnpschedulingandquestions@childrens.harvard.edu
In this section
Some of these resources are written by adults, for adults. Some are written for kids or teens. Families are encouraged to preview the resources and to select ones that align with their values, needs, and goals.
The titles and links on this page are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information in these resources.
Heart defect memoirs
These books are written by people with heart defects. The authors describe their experiences growing up and living with this disease.
Congenital Heart Defect Stories of Hope, edited by Anna Jaworski
For the Strong Girls, by Natalie Nolan
From the Sidelines to the Finish Line, by Emily Falcon
A Heartfelt Journey, by Michael Peck
The Hearts of a Girl, by Jessica Carmel
My Glory Was I Had Such Friends, by Amy Silverstein
The Open Heart Club, by Gabriel Brownstein
Que Sera, by Barry T. Cull
Sick Girl, by Amy Silverstein
Take Heart, by David Craig
Patient voices online
These websites feature the voices of children and adults living with heart defects or other chronic diseases. Their perspective and expertise can help everyone to better understand and appreciate the CHD journey.
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Non-Affiliation Disclaimer
This web site, article or resource is not endorsed by, directly affiliated with, maintained, authorized, or sponsored by Boston Children Hospital. All product and company names are the registered trademarks of their original owners. The use of any trade name or trademark is for identification and reference purposes only and does not imply any association with the trademark holder of their product brand.
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Don't see what you're looking for? Let us know what you want to learn! We will try to add content to respond to your needs. Email CNPschedulingandquestions@childrens.harvard.edu