What To Read When You’re Parenting A Child With A Heart Condition

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Raising a child with a congenital heart defect can be challenging—physically, financially, and emotionally. While it might seem overwhelming, there are many resources to help parents cope with these challenges.

One of the easiest things you can do is read. Whether it’s about another heart kid or general parenting advice, a book can give you the support you need.

Here are my 5 reading recommendations if you are parents of a child with CHD.

1. You’re Here for a Reason (by Nancy Tillman)

You’re Here for a Reason shows kids that being “different” isn’t a bad thing. Everyone is different in some way, and the world would be incomplete without each person.

This is a book that’s written for children, but it’s a great bedtime story for you and your heart kid to share. The message is true for parents, not just kids.

2. Raising a Heart Child: A Parent’s Guide to Congenital Heart Defects (by Jennifer Fleming)

Hearing from other parents of heart kids can be extremely comforting. Raising a Heart Child tells the story of Jennifer Fleming, whose son grew up with CHD. It includes stories about her son’s journey, and her family’s struggles and resilience.

Raising a Heart Child is also educational. It explains details about CHD in terms that are easy for most of us to understand.

3. A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children (by Jolene Philo)

A Different Dream for My Child was written by Jolene Philo, a woman whose son was hospitalized many times due to a birth defect. Throughout the book, Jolene shares lessons that she and other parents in similar situations have learned.

This book comes highly recommended from parents of chronically ill children. It’s been called a “lifeline for struggling spirits” and “hope in the midst of struggle.”


4. Chicken Soup for the Soul: From Lemons to Lemonade (by Jack Canfield, Mark Victor Hansen, and Amy Newmark)

With more than 250 titles, the Chicken Soup for the Soul series has covered everything from power moms to celebrities with cats. There’s a set of inspirational stories for everyone.

This edition is a collection of stories about making the best out of a bad situation. It’s easy to see just the bad when your kid has a heart condition, but it’s important to recognize and cherish the good, too. These stories can help you remember to do just that.

5. Carry On, Warrior: The Power of Embracing Your Messy, Beautiful Life (by Glennon Doyle Melton)

Many parents of heart kids feel like they’re alone, or like they can’t handle the difficult times. However, they might brush those feelings aside and try to put on a brave face.

That can actually make things worse. Carry On, Warrior reminds parents—especially moms—that they are not alone, and they can make things easier just by admitting that something is difficult. The book encourages moms to let go of the idea of perfection, believe in themselves, and focus on the love in their lives.

Please share your thoughts in the comments on what to read when you’re parenting a kid with CHD below.

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Sean Akers

Hi, I’m Dr. Sean Akers, and I’m a Licensed Clinical Pediatric Psychologist at Children’s Hospital & Medical Center in Omaha. I serve as the primary psychologist for the heart transplant team as well as the coordinator of the Consult Liaison Service. My job is to provide heart kids and their families with support throughout their journey.

2 Responses to "What To Read When You’re Parenting A Child With A Heart Condition"

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  1. Joseph P. Hillenburg

    August 26, 2016 at 12:58 pm

    I’d like to also put in a vote for Swim: A Memoir, written by a man who received his first heart transplant as an infant, and his second as a college student. I think it is a good read both for parents and for older children.


  2. Melissa Mannella

    December 13, 2016 at 6:34 pm

    I’d like to suggest my husband’s memoir, The Zipper Club, published in May 2016 by Vine Leaves Press. For more information, please visit http://www.thomasmannella.com.



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