There are thousands of books that talk about heart disease and heart health. They cover everything from your diet to exercise and alternative medicine plans. Most of them are some sort of “REVOLUTIONARY PROGRAM” designed to help you reverse heart disease or protect yourself before it starts.
But what about congenital heart disease? For those of us born with broken hearts to begin with, there isn’t much in the way of nonfiction or even fiction that walks you through a day in the life of a CHDer or adult CHDer. Forget trying to find books on congenital heart disease that are gender-specific either. It’s a well-known fact that women with CHD can suffer differently than men and vice versa. When searching for books on congenital heart disease, I kept coming up empty-handed, that is unless I wanted complicated books that were more about the pathology than they were about the stories behind the CHDs.
Actual representation of me trying to focus on anatomy and pathology textbooks.
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Thankfully, I have two great reads that showed up in my life when I needed them. The first one up is the perfect read for a tween or teen who has a CHD.
My Open Heart by Andrea Buginsky is a story about hope, never giving up on dreams, and growing up with CHD. I would’ve never known about this book if the author’s mother hadn’t reached out to me personally. She had seen one of my posts and wanted to connect. Her daughter, Andrea was a YA author and a fellow ACHD patient. Through my contact with Andrea’s mom, I learned she was only a month older than me. Our paths never crossed (we lived in different states) but because we both grew up in the same decade, and were born with CHD, I immediately felt connected to her.
My Open Heart chronicles Andrea’s life with Tetrology of Fallot and TGA (my defect). She wrote the book for kids and teens who are also living with a congenital heart defect(s). She wanted these kids to know that they weren’t alone; that it was okay to be scared and feel the way they do. She provided inspiration and information that only someone like us can give. I recommend this book for kids in 6th through 12 grade, although parents may want to consider reading this with their younger tweens or children.
Andrea passed away in summer 2016, unexpectedly of pneumonia but her story and her YA books live on for younger generations.
The Open Heart Club: A Story about Birth and Death and Cardiac Surgery was gifted to me through Netgalley. I’m a book reviewer there and love finding interesting reads I otherwise would’ve never discovered.
Like Andrea Buginsky’s book, The Open Heart Club is part memoir and part history lesson. The Open Heart Club by Gabriel Brownstein is the first book (I’ve seen at least) that gives readers not just a glimpse of life with CHD but a comprehensive view of how open heart surgery got to where it is now. You learn more than just the author’s story but you learn the story of many more children born with a congenital heart defect and the pioneers in heart surgery who gave them a second chance. Though the book is largely dedicated to Brownstein’s defect, Tetrology of Fallot, he gives brief overviews of many other heart defects children are born with.
I was thrilled to see my defect, Transposition of the Great Arteries get a nod in the book as well as more information about the two surgeons who created the repair methods that were used on babies and children from the 60s to the late 80s. I could relate to many of Brownstein’s feelings about his defect. I highlighted several places in the book that resonated with me, made me feel seen, and made me cry.
Brownstein writes, “As a kid, as a teenager, as a young adult, I was determined never to be the victim. I had learned from an early age to disguise and deny my symptoms, act healthy even when unwell.” Brownstein shares his experiences feeling ashamed and embarrassed about wearing Holter monitors, shyness around the opposite sex, “The more interested I got in girls, the more I thought the scar on my chest would turn them off. Even into my late twenties, I was embarrassed by the scar“. There are no words to express how SEEN I felt when I read that; Finally! Someone who was embarrassed by their scar; a potential turn off for a partner or lover. It felt like Brownstein had opened my head and pulled out many of my feelings about being born with a congenital heart defect.
Brownstein offers a more detailed account of his life with CHD and intertwines it with history and interviews with some of the pioneering heart surgeons. He surprises you with little known facts about the surgeons and shines lights on others who might have otherwise been forgotten.
One thing Brownstein asks you keep in mind is this is book is written from an autobiographical point of view as cardiology and the history of heart surgery relate to Brownstein and so there are a number of details pertaining to other CHDs and surgical procedures have been left out.
The Open Heart Club is definitely my favorite of the two reads but I think that has more to do with the fact that Buginsky’s book is geared more towards young adults.
Both books are wonderful reads and I highly recommend them both. I especially recommend them for anyone who has never struggled with a life long illness, someone who has said, “I can’t imagine…” because this is probably as close as you will ever get to imagining life like me.
What books are you reading this month? I’d love to hear about them in the comments.
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