The Open Heart Club: A Story about Birth and Death and Cardiac Surgery

by Gabriel Brownstein

This absorbing and poignant book is not merely the story of one writer's flawed heart. It is a history of cardiac medicine, a candid personal journey, and a profound reflection on mortality.




Born in 1966 with a congenital heart defect known as the tetralogy of Fallot, Gabriel Brownstein entered the world just as doctors were learning to operate on conditions like his. He received a life-saving surgery at five years old, and since then has ridden wave after wave of medical innovation, a series of interventions that have kept his heart beating.




The Open Heart Club is both a memoir of a life on the edge of medicine's reach and a history of the remarkable people who have made such a life possible. It begins with the visionary anatomists of the seventeenth century, tells the stories of the doctors (all women) who invented pediatric cardiology, and includes the lives of patients and physicians struggling to understand the complexities of the human heart. The Open Heart Club is a riveting work of compassionate storytelling, a journey into the dark hinterlands between sickness and health lit by bright moments of humor and inspiration.

Genres: Nonfiction, Science, Memoir, Medical, History, Biography, Book Club

368 pages, Hardcover

Published October 22, 2019

Reviews

[Alissa · Rating 4 out of 5]

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.

[Dawn Michelle · Rating 5 out of 5]

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.

[Valentina · Rating 5 out of 5]

I honestly, sincerely loved this book with all of my heart. As a person with a Congenital Heart Defect (CHD) like Gabriel Brownstein, I found a lot of value in his research and lived experience. This book is a hybrid of the scientific history and a memoir.

I learned so much reading this book. I had no idea about how it took humans so long to understand the human heart and its function. There is a detailed history starting with early autopsies in the thirteenth century, to the smart but reckless doctors who did the first successful surgeries in the 1940's. The science in this book is fascinating.

Gabriel Brownstein is a great storyteller. He showed the many facets on how a CHD affects the psyche. He articulated his own experience and the way he thought about his heart throughout his life in a really honest and wise way. He also integrated the stories of other heart patients.

Brownstein also doesn't shy away from the difficult. Some of the descriptions get gory. He shows the pioneering doctors honestly, even when it's unflattering. He acknowledges the heart patients who died in early attempts at open heart surgery, as well as the lab animals who gave their lives for medical discovery.

This bok is an informative but also emotinal read. If you or someone close to you has a CHD, defnintely read this. You won't regret it.

[Nichole · Rating 5 out of 5]

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.

[Nancy Kennedy · Rating 5 out of 5]

In this book, the author has woven a tale of his personal struggle with a serious heart defect (tetrology of Fallot or "blue baby" syndrome) with the larger story of the history of cardiac knowledge and surgery. He was among the first generation of children who have been able to live into adulthood because of advances in the field. Both he and his doctors have been pioneers of a sort.

I have to admit that the chapters on the anatomy of the heart and the particulars of the different heart defects went way beyond my ability to comprehend. Beyond a vague image of a four-chambered heart, I really can't keep track of the names and placements of all the blood vessels and valves. But no matter -- the most compelling part of this book for me was Mr. Brownstein's personal story and those of other heart patients he interviewed.

I also enjoyed his back stories on many of the doctors and researchers advanced knowledge in the field. He gives ample credit to women such as Dr. Helen Taussig, noting that women almost exclusively had the pediatric cardiology specialty to themselves, not being of interest to male doctors. The contributions of Vivien Thomas, an African American medical technician who was not allowed to become a doctor because of his race, are given full credit here.

Mr. Brownstein quotes Susan Sontag's famous opening line in the New York Review of Books: "Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." He describes how he has wavered between worlds, pretending to hold the passport to the kingdom of the well, but knowing that he is undeniably in the other frightening kingdom. Much of the book deals with his decades-long refusal to listen to the advice of his doctor, who wants to perform a relatively new procedure on his heart.

Good companion reads to this book would be "The Heart Healers: The Misfits, Mavericks, and Rebels Who Created the Greatest Medical Breakthrough of Our Lives" by James Forrester, MD, or "Ticker: The Quest to Create an Artificial Heart" by Mimi Swartz.

[Colm McEvilly · Rating 5 out of 5]

I’m gonna come back to it after therapy. But I don’t recommend this book for anybody who knows they have lingering trauma.

I’d be curious to hear what other People lucky enough to have multiple open-heart surgeries thought of the book. I guess I’m not brave enough to face his book YET. But I will be one day.

This book is absolutely terrifying. I’m giving it five stars because it’s the most evocative book I’ve ever listened too. I can only make it in about 30 minutes before I started bawling my eyes out. I’ve had multiple open heart surgeries and this is the most UNCOMFORTABLE CRY inducing book ever.

This book Basically made me realize that I need to go to therapy because I broke down in the middle of a walk only 5% into the audiobook. Absolutely haunting, the emotions that raise to the surface. My girlfriend recommended the book to me after finishing it, she said that most of the book they talk about the advances in technology and how far they came, but quite frankly if anybody’s been resuscitated multiple times in the hospital room due to heart problems this is probably NOT THE BOOK for you.

It’s really traumatic hearing about the surgeries. As lucky as we are to be able to have the surgeries, we don’t want to relive the thoughts of them cutting through our sternums again and Prying apart our rib cage.

[Debbie · Rating 5 out of 5]

I can't think of a time when I've found myself in tears at the end of a work of non-fiction until this book. I've always been interested in reading about medical history, but what really drew me to this book was that during the past eight years two of my brothers have undergone life saving open heart surgery due to a congenital heart defect. Their defect was thought to be just a benign heart murmur when they were young, but became life threatening as they aged.
The author writes about his experiences with open heart surgeries and living with congenital heart disease in an open and candid manner that helped me to gain some understanding of what my brothers experienced. In alternate chapters the author explores the fascinating history of open heart surgery. Even more interesting was that I learned about the contributions made by women and people of color.
At the end of the book I was overcome with gratitude to everyone who, over the years, had a part in saving the lives of my brothers and so many other people.

[Lindsey · Rating 4 out of 5]

As with most histories of medical advances whether they be cardiac or other, a similar theme weaves through which is the doubt, disbelief, and outright pushback of scientific progress and research. History continues to repeat itself. This was well researched and written, combining a history (quite recent, in terms of medical advances) of cardiac surgery and personal stories. I appreciate his vulnerability to share his lifelong fear of physicians and medical facilities—brutally honest. Much respect to medical pioneers but mostly to patients who gave their lives so others in the future could live.

[Ginny · Rating 5 out of 5]

Full disclosure: this author of this book is a distant relative (my cousin's husband's brother) and I didn't know he had heart trouble until this book was published. I couldn't put it down! I know now Gabe Brownstein had been born with a trio of heart defects that likely would have killed him if he'd been born a decade or two earlier. His life was saved again and again by advances in cardiac surgery and technology that often seemed to become available to him just as he needed them. He describes the imperfect and often grizzly world of cardiac medicine in alternating chapters with his own moving story of living more than 50 years--working and raising a family--with a heart he can't count on. I recommend it wholeheartedly. (I listened to the audiobook version, skillfully narrated by the author.)

[Isabelle · Rating 4 out of 5]

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.

[Blaine Wajdowicz · Rating 5 out of 5]

A wonderful mix of medical history with personal narrative. Sometimes, in the light of the astounding discoveries and innovations made (especially in a short timeframe), we forget about the traumas subjected to the human body in the aim of health, treatment, and cure. This was the right voice to remind us of the experience: one that doesnt glorify their condition or make it core to their identity but vehemently tries to define themselves as healthy in spite of (and because of) all they have gone through.

[Amie Canfield · Rating 4 out of 5]

My daughter had Open Heart surgery when she was a child (thankfully). I've appreciated Brownstein's insight into the history of the daring surgeons, researchers and unknown female pioneers in this field. Excellent read, not only for survivors and families, but for anyone who wants to learn more about the wild history behind our modern medical interventions.

[Elizabeth Hayhoe · Rating 5 out of 5]

Loved this book! Fascinating! I learned so much about the history of cardiac surgery, from a patient’s perspective.

[AJ Payne · Rating 4 out of 5]

Audiobook.

I really enjoyed this book for both of the purposes it had - as a history of congenital heart defect repair (and therefore largely a history of cardiac surgery) and a memoir of someone who was born with a congenital heart defect.

On the memoir side, this gave me a lot to think about in how someone who has a lifelong heart illness would handle it - how much so many people appear to just ignore it in the case of CHD repaired in childhood. It was a really interesting, and honest, look at how this author - and some of his contacts - have dealt with having a heart that was defective from birth and therefore could become a problem at any time throughout their whole lives. Really interesting.

The other part of the book is a history of cardiac surgery through the lens of CHD, which really drove so many of the developments needed for all the cardiac surgeries that people undergo now. I hadn't considered how truly young all of the developments are. There really wasn't any way to help children with heart defects until the 1950s, and that was all experimental and new and dangerous. It's amazing how far medicine has come. The author highlights that many of the early heroes of the field were women or black people, even though they don't get the limelight.

The author also did a good job of weaving his story into the history, because he really was born at a fortuitous time when every time he really needed medical intervention, a recent development in the field came to make sure that he was able to stay healthy. How fortuitous for him (and his contemporaries) thanks to the hard work of the pioneers in the field.

In audio, the story seems to jump around a bit and doesn't always make sense linearly, which could be how I listened or it could be a flaw in the writing style. But overall, I found this to be a minor annoyance and really enjoyed the book overall.

[Michele Shreve · Rating 3 out of 5]

This book is a combination memoir and scientific non fiction about the innovation of pediatric and adult heart open surgeries.

Gabriel was born with tetralogy fallout which is a combination of heart defects. But luckily he was able to get surgery to help with his symptoms. In the memoir portion he shares his life story dealing with his heart problems and the eventual surgeries he would have to have.

Sprinkled in this memoir Gabriel talks about the discovery of heart defects, the introduction of pediatric cardiology, advancements in heart surgery defects and the giants in cardiology

Now I read a lot of scientific non fiction and my biggest problem was the flow of the science sections didn’t really flow. He would jump around the timeline, go back and forth on who he was talking about and it was hard to follow what he was talking about sometimes. I really wanted to like this book as it’s been sitting on my shelf for a while but it left me wanting more and I wish the memoir portion would’ve been less of the book.

[Karen · Rating 5 out of 5]

"We were a new kind of people, and we wanted to be recognized and taken care of." This sentence resonates with me so deeply.

My experiences with tetralogy of fallot, ventrical tachycardia, and porcine pulmonary valve replacement track closely with Brownstein, but I lived them a few years later. He also laid out a description of procedure he had in 2018 that I'll probably need in the next few years. I saw myself in his description of trauma, abandonment, fear, denial, and ultimately education, acceptance, power, and connection.

The history of pediatric cardiology was fascinating. I'm forever grateful for the outsiders (based on gender, race, and ability) who were on the cutting edge of technology and care. Brownstein also points out how these shining medical marvels are dimmed due to lack of access in the US's profit-based health care system.

An excellent and emotional read.

[Emir Akel · Rating 5 out of 5]

A remarkable book harmonizing the journey of a pediatric heart patient with Tetralogy of Fallot (the author) and the history of pediatric cardiac surgery. Gabriel Brownstein shares his own journey as a kid fighting with Fallot's Tetralogy onwards to his journey as an adult heart patient. He also dives into the giants of whom cardiac surgery stand on their shoulders. Mavericks of pediatric heart surgery like Hellen Taussig, Alfred Blalock, Vivian Thomas with their BT Shunt's remarkable story is also mentioned. The author continues with Waltom Lillehei's work on cross circulation and John Gibbon's work on the cardiopulmunary bypads machine which sets the stage for more complex operations. The book has a somewhat similiar tone to Dr. James Forrester's The Heart Healers with less detail on the history of cardiac surgery but more also on focusing on the human patients aspect of congenital heary disease.

[Sarah]

Disappointed that this book does not truly offer a vision of the women cardiologists who (as the jacket copy claims) invented pediatric cardiology. The history of heart surgery is well rendered although the author could have used his own story and body as a stronger narrative device: the fact of medicine advancing in real time to his health deteriorating is not underscored enough in my opinion. That is the true tension that has driven adult congenital heart disease. Overall, if you don’t know much about heart surgery this book will give you a decent primer. If you do know a little, it will not offer that much.

[Laura Diamond · Rating 4 out of 5]

Easily one of the most stressful and fascinating books I’ve read this year. I loved the way Brownstein parallels the history of cardiac surgery with his own personal experience. Some of it was downright horrifying. All of the experiments and deaths left me feeling sad and a little sick. As for Brownstein’s own journey, I felt frustrated every time he ignored the doctor’s advice or his own feelings, but I also emphasized with him because he was so honest and vulnerable about his denial/fears. This was a good one. 4.5/5.

[Michael Iannazzo · Rating 4 out of 5]

Gabriel Brownstein offers a compelling journey through the history of cardiac surgery, and for someone like me, born with congenital heart disease, it resonated deeply. The author intertwines the evolution of life-saving procedures with his personal experiences as a cardiology patient. The book introduced me to some of the key pioneers in the field, sparking my interest to explore more on the subject. Brownstein’s blend of medical history with modern-day reflections made for an insightful and engaging read.

[Ashley · Rating 5 out of 5]

Wow. Impressive and interesting history of cardiology combined with personal experience and interviews. As someone connected with multiple people with CHD, I marked chapters I would re-read for their fascinating information. But, where is Otis Boykin in this history? I personally would have appreciated a bit more than just 1 or 2 chapters about the development of electrophysiology. I suppose that is for another book. Overall, it was a great read.

[Joe · Rating 4 out of 5]

Well written, flawlessly edited, and extensively researched.
A great book that tells the incredible story of the pioneers of pediatric congenital cardiac surgery, and that of the birth of modern congenital cardiology.
The book also tells the story of one patient's journey from birth through middle age, and of all of the fears that come from living with such pathology.

[David Ryan · Rating 4 out of 5]

Having had two open-heart surgeries myself, the book aroused my interest. Much of it deals with medical contributions made by surgeons in Minnesota, both at the U of M and the Mayo Clinic. Interestingly, the surgeon for my first cardiac operation was Dr. Sara Shumway, daughter of Dr. Norman E. Shumway, credited with making the first “successful heart transplant.”

[Emilee (emileereadsbooks) · Rating 3 out of 5]

Thank you Netgalley and Public Affairs for a free digital copy.

I learned so much about open heart surgeries and the history of this field of medicine while reading this title. This book is a hybrid of science textbook and memoir. I think it is well written, but something about the writing style didn't click with me. I wasn't fully invested.

[Nathalie · Rating 5 out of 5]

Great insights into the field and how advances in pediatric cardiology benefit the wider medical and patient community. It wasn't just a compelling narrative about the author's experience, but also important background info, such as the history and broader efforts that impacted the evolving technologies in congenital heart disease. Learned a lot. Highly recommend.

[Andra Teodora Stroe · Rating 5 out of 5]

Great book! I have read a few books about CHD, but this definitely the best.
As a parent of a heart warrior this book helped me see beyond my fears as a parent and cange my perspective of how a CHD person might feel. I hope this book will serve my purpose to rise my daughter to be aware of her heart condition but at the same time fearless.

[Anne O'malley · Rating 5 out of 5]

Extremely engaging and rich with interesting facts. The history of cardiology through the development of pediatric cardiology blends beautifully into the author’s own life. Highly recommend this book!

[Marcia · Rating 5 out of 5]

A really fascinating and well written deep dive into congenital heart conditions and the early days of intervention and surgery. It was terrifying and uplifting both.

[Michale · Rating 2 out of 5]

I learned a lot about both the author and the field of cardiology from the book, but Brownstein jumped from topic to topic so often that finishing this book became a chore. And then I had to miss the book club meeting.