Parent Stories: Kids with Congenital Heart Defects
Ages Prenatal - 24 years
Having a child with a heart defect can be an isolating experience. Some parents feel like they have trouble connecting with parents of healthy children, since their experiences are so different. However, having a child with a heart defect can also be an opportunity for connection, and an entry into a wonderful community of families in similar situations. In these resources, parents tell their stories through books, blogs, and podcasts. They offer insight and understanding to other families.
In this section
Please note that some of these resources address the topic of child loss. Take care when selecting the right resources for you at this time.
Resources that include a focus on child loss are marked with an asterisk: *.
These titles and links 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 books or links.
Parent Stories in Books
In these memoirs, parents of children with CHDs tell their stories. Reading these real-life experiences can help other parents to feel less alone, and to find validation and inspiration in other people's journeys.
The Heart of a Father, collected by Anna Jaworski, Baby Hearts Press
The Heart of a Mother, collected by Anna Jaworski, Baby Hearts Press
Heart Warriors: A Family Faces Congenital Heart Disease, by Amanda Rose Adams, Behler Publications (*trigger warning: child loss)
I Hate Pinatas, by Heather Maloy, Smashwords Edition
*More Than We Expected: Five Years with a Remarkable Child, by James G. Robinson, Post Hill Press (*trigger warning: child loss)
Raising a Rare Girl, by Heather Lanier, Penguin Books
Showing Heart: The True Story of how One Boy Defied the Odds, by Leighann Marquiss, CreateSpace Publishing
Special Heart, by Bret Baier, Center Street Publishing
Twin A, by Amit Majmudar, Slant Books
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Parent stories online and in podcasts
On these websites and in these podcasts, parents of kids with heart defects or other chronic diseases discuss their journeys, and share what they have learned. We invite other families to read these stories, and perhaps to share their own. Our stories are all worth telling.
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