Customer Reviews

My Heart vs. the Real World: Children with Heart Disease, In Photographs & Interviews

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Wow........I got this book for my almost 10 year old son. He has TOF/DORV, had tons of complications, ending up in PICU for a year and emerging with lots of "accessories" including a trach, ventilator, oxygen, gtube, pacemaker and nurse 24/7. He has been without those lovely things (except the pacer) for many years now, but is starting to come to the realization that his life is different than many of his friends. Not tons different, but different. He has loved Camp Del Corazon, and we got this for him to continue to help him see that there are lots of kids who have had similar experiences.

So last night I grabbed it at 11:30pm and started flipping through it.....I was engrossed. I didn't put it down until 1:30am and I was in tears and very prayerful. Sometimes even with all that we have been through, and all the support he needs, I get caught up in the laundry, bills, shuttling kids to ballet/golf/physical therapy, and don't really remember how complicated and beautiful and terrifying his life is. How varied and amazing these kids are, yet they are tied together with such similar life experiences. This book, in it's beautiful (though solemn) photographs and words of the children and their parents, put on paper what we have known for years. That despite these struggles, these differences, this identity as the "heart kid", that these kids can find their own way in life and are richer and more compassionate for it.

Max Gerber did an amazing job with this book, and gave all of our kids a wonderful gift. It lets them meet other children and see the range of experiences in families dealing with various CHDs. This is a MUST BUY for you and your child. I am buying it as gifts for our Ped Cardiologist, and other families I know who are dealing with this as well. Bravo.

This is an incredible and unique look into the lives of people with congenital heart defects (CHDs). Max Gerber's photographs and interviews are incredibly personal and through them I got a sense of the enormous bravery and maturity that every child faced with a life-threatening illness must develop. I don't have a heart defect, but have friends with CHDs, which is how I came to this book. The perspectives given by the children and their families are an inspiration to anyone. I would've bought this book for the interviews or photographs alone, but together, they create a profound message, the likes of which I've rarely seen.

Not knowing anyone affected with Heart Disease, I approached this book from a photography standpoint. Taken by the photographs, I sat down and read the book and was immediately drawn in.

Woven into this book is Max's story. He is in the book, in words and pictures, telling his story of being a kid, like the kids in the book, growing up with heart disease. He tells us, his parents tell us, about his childhood with words and pictures and then gets into the stories of the kids in the book.

After reading Gerber's chapter on himself, one can't really look at the images of the kids the same. At it's best it seems like he is channelling the kids, finding aspects of himself in each kid to focus in on, which gives the photographs this kind of psychic power. When Gerber photographs a bunch of boys ripping open a present at a birthday party, it just seems to transcend the subject matter into a picture about wanting to have a normal life with small normal thrills.

The photographer isn't really just connecting with his subjects in this book, it seems like he is trying to figure something out thru them... and we are just here witnessing it all. By the time you get to the end of the book and see the shot of Gerber photographing himself in the mirror with two of the kids, the book kind of hits this emotional crescendo and you see what this is about. MG is using photography to understand his own life, thru these kids. The book was a document of this kind of personal fact-finding mission.

I am a parent of a 3 year old boy with Tetralogy of Fallot (TOF) who has had 2 open heart surgeries and a heart cath before his first birthday and will endure several more surgeries into his adulthood. I have been actively trying to collect books with information to help us prepare him for life with a Congenital Heart Defect (CHD) and to make his "normal" well, normal! This wonderful book was referred to me and I immediately preordered it. When the book arrived, my husband and I could not stop reading it and taking turns with it. I then sat down with my son and we looked through the book at the pictures and he immediately noticed one of the boys zipper scars and pointed out that the scar was like his! YES!!! I loved that moment and we look at it frequently so he can see others like him instead of people staring at his scar and making him feel uncomfortable. Plus the book is helping him to understand what his next surgery is going to look like since he is going to be older and will undertand what is going on since he saw one of the young boys with his surgery.
I hosted a family support meeting for other families with children with CHD's and several looked at the book and emailed me later asking where I had gotten it. I know tell many families about this book in hopes that it will help their children as it has already helped my son and help the families as the book has helped me.
Thank you Max Gerber for putting this book together and putting faces and zipper scars out there for people to see how CHD looks!Congenital Heart Defects are the number 1 birth defect that no one really knows about and there is so much awareness that needs to be put out there for current and future families with children with CHDs. Hopefully this book will help get that awareness out there and help others with CHDs!

this book is stunningly photographed and full of moving personal stories. it's inspiring and real. an utterly wonderful book.

Hi, I am "A Mom with a thirst for truth & knowledge"...

This book is a great book of photography and excerpts from each child and family. It highlights children growing up with congenital heart disease (CHD). Their personal accounts reveal their true feelings and by sharing their personal experiences, have inadvertently shown others how they have handled their own lives through extraordinary situations. These children and their families are an inspiration through their bravery and willingness to share their lives with the world.

Max has captured each subject magnificently through his excellent expertise and very revealing photography.

Hopefully this book will help bring about awareness to the many people who do not realize that Congenital Heart Defects are the number 1 birth defect in children. This beautiful book will help get that awareness out there and consequently help others with CHD!

Thanks for putting this book together Max, I appreciate all your hard work and I'm sure, many frustrations, that you have gone through over the past few years in compiling the materials for this book. I know and feel that your book will be a wonderful success and that the ultimate goal for this book will be an instrument of hope that gives other parents and children with CHD an understanding to those who have not experienced it.

My recommendation is that you purchase this elegant book of photography... experience it for yourself, share it with your children and families and enjoy it as much as I have.

This is an amazing book! I bought it for my son who was born with a heart condition to show him when he is older that he isnt alone. I think this is a must read for all families who are affected by heart disease!

There's fair amount out there now written by and for medical doctors &/or parents about kids with congenital heart defects, but what has been really lacking are children, teen and adult survivors of congenital heart defects telling *their own stories* in dynamic, professional & relevant ways.

As a professional photographer out of L.A., Max does an amazing job of letting his subjects be, getting to know them and telling their stories - not to mention taking fantastic pictures of them. This book takes on a new meaning though when he turns the lens on himself and gives himself, also a congenital heart defect survivor, the same treatment.

This is a view into the lives of congenital heart defect survivors that no doctor or even parent could put together - it is truly done *about* congenital heart defect survivors *by* congenital heart defect survivors.

A must read for anyone who would like to know more about what America's #1 type of birth defect does to the lives of some of it's estimated 2 million survivors - how we live our lives because of and despite our defects.

...From one survivor to another, thank you to everyone involved in this project & everyone who takes the time to read this amazing book with it's -as yet- very unique perspective.

This book has touched my life more than any other book I've ever read.

As a heart-mom to a 4 month old with CHD (TOF with Pulmonary Atresia), I have been keeping myself as informed and educated as possible on heart defects (what they are, what to expect, etc). With that said, CHD websites and medical textbooks can never capture what Max Gerber captured in this excellent written and utterly moving book (and I have researched a lot of websites!)

I could not put this book down. I was moved to tears at several intervals, and I felt as though my eyes were opened to what my child will face in the future. The author brilliantly illustrates the mind frames of children who live with CHD; their hopes and angst, and acceptance of their fate. The children portrayed in the book are so honest and selfless it is sincerely humbling. As soon as I finished reading it, I immediately began to read it again. I will also keep it on my coffee table, I want everyone I know to read this book to understand what it is like to be a heart-mom or to be a child living with CHD. I appreciated seeing the world of CHD from the patient's point of view. Truly a one-of-a-kind experience.

Kudos to the author for taking on this project and accomplishing this wonderful mission. Your book has touched my life more than I can express. Also, thank you to Amazon.com for recommending this book based on a search for another book on CHD.

I recommend this book: TWO THUMBS UP!

I loved this book. I smiled and cried at the touching photos and stories featured in this book. The photography is incredible and you can feel the emotion in the photographs. The stories are inspirational, told both from a child's view and a parents view of the struggles these children have faced in their childhood. As the mother of a young child who also was born with heart defects, I found great hope, faith, and inspiration within the pages of this book.

The stories and photographs are so captivating I could hardly put it down until I had read the story of each child,and when I finished, I started it all over again, to look more closely at the photographs and the stories they tell all on their own...this book is a must buy, especially for anyone who's child faces a chronic illness, such as congential heart disease. I am so thankful to the author, Max s. Gerber for giving this fight a voice.