Cover Image: The Open Heart Club

The Open Heart Club

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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.
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The Open Heart Club by Gabriel Brownstein is a great addition to my memoir titles this year. Brownstein simultaneously tells us about his personal struggles with congenital heart disease as well as a partial history of the field of pediatric as well as adult cardiology. This is not the book to read if you want a comprehensive history of pediatric or adult cardiology but do not let that deter you from reading this gem. Bronwstein focuses on the testing and surgery procedures that have been relevant to his personal journey. I really like how he jumps back and forth between the history and his own life rather than doing one completely first and then the other because it really ties everything together well. He also does not simply focus on the procedures but tells us much about the different scientists that developed them. He did a great job of combining history and personal relevance.
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When I was eleven years old, my seven year old sister went to Cleveland Clinic to have open heart surgery. I was told very little about this [and after reading this book, I am pretty sure that my parent's were also told very little about both the surgery and just how serious my sisters heart defect was] and was sure she was going to die. We had, in prep for this, a huge vacation to Florida and Disney and that was what clued me in that she was going to die so I tried to be nicer to her [we have never been particularly close]. While she was in the hospital, I was taken to Cleveland to visit her [mind you, no one told me what to expect]. It. Was. Horrifying. I was SURE she was going to die, even though the surgery was over and she was doing better than she had ever done in her whole short life [I remember her running and turning blue, her fingers being blue,that kind if thing]. A kind nurse took me to a play area and sat me down and explained what had happened, what was going to happen [in regards to her healing] and answered all my questions. And my sister lived. And has lived well. Though I now have a huge urge to contact her and ask her to PLEASE find a cardiologist and have her heart checked. Because she is one of the many mentioned in this book where care has just slipped away. So much of this book rang true to me and my experience with what her life was like pre and post surgery.

I say all that because most people, when I told them I was reading this book, looked at me in confusion and asked me WHY in the world would I be reading it. Because medical stuff has always fascinated me, heart surgery even more so because of my familial history and even with that, I realized how little I knew about the history of it. And this book really hit all of the marks with me. It was such an amazing history lesson - I had no idea that heart surgery was still so relatively new and just what people went through to even survive it and what the doctors went through to heal their patients. My sister has a VSD - Ventricular Septal Defect, a completely different defect than what the author has, but the surgery and recovery are nearly the same. Like it is for most children and adults with heart defects. And Gabriel Brownstein describes it all in such amazing detail, that I was often transported back to that time when I visited my sister and was taught about her surgery. I admire his ability to be transparent about his illness and how he hid in his "wellness" shell for so long. And I admire his research; this is a very well laid-out, researched book. I was almost sad when it was over.

If you like books about medicine and are interested in where and when heart surgery started and why [though that seems like a simple thing], this is good book to start with. It is open and honest, sometimes funny, sometimes scary and often sad - it is one of the better medical books I have read in quite some time. I am really glad that I picked this one up.

Thank you to NetGalley and Perseus Books for providing this ARC in exchange for an honest review.
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The text is all jacked up on this one! Random page breaks, the words are all cut off and it’s very disorienting while trying to read. The story fell flat so it unfortunately didn’t make up for it either. I love learning about the heart having my own heart complications yet this didn’t do it for me.
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I received a copy of this book in exchange for my honest review.   Thank you NetGalley!

This book is unique in that it's not just a memoir.  it includes history, information, and more. 
This book will definitely be of interest for CHD patients and their families.
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NOTE: I received a free Advance Reader's Copy of this book from NetGalley in exchange for an honest review.

If there was ever a target audience for this book, it was me -- I also was born with a congenital heart defect, and as I read the book I realized that the author and I have seen several of the same doctors and practitioners.  Anyone who is a CHD patient will be interested in reading this book - which is part memoir of the author's own experience as a heart patient and part history of pediatric cardiology, the development of open heart surgery and the development of the practice area of adult congenital cardiology.  Brownstein's defect is different than mine so much of the focus was on the surgeries and procedures specific to his defect (tetralogy of fallot) and I wish there had been more about the history of treatments for other defects.  But regardless, it was fascinating to learn about the subject and also a little frightening to read about Brownstein's experience with being shocked by his ICD, as someone with an ICD herself. It was also great to read his description of our cardiologist - it was spot on! 

 I do wish there had been some type of timeline included as a reference -- since the book goes back and forth between the history and the memoir, it would be nice to have a 1-page summary or timeline illustrating the advancements that took place from 1900s-2018, by which physicians and where they were located.  

Though this book will naturally be of interest to CHD patients, I hope it reaches a much broader audience.  Anyone interested in history, cardiology, medicine, surgery or memoirs  - or just interested in a look into the life story of a "regular person" who in this case happens to have been born with heart defect  - should read this book.  Brownstein does an excellent job in one of the closing chapters discussing how this could be any of us, how any healthy person is really just one diagnosis away from sickness and how as a society we need to realize this and develop healthcare (really, sickcare) accordingly.
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