Open Hearts: Stories of the Surgery That Changes Children's Lives

by Kate Bull

Until the 1960s "blue babies" were a striking sight in our streets. Suffering from congenital heart disease offered a bleak outlook to young patients and a heartbreaking experience for parents. Very few would make it to adulthood; now, in the West at least, most have a much higher chance of survival. In Open Hearts Kate Bull tells not just of the development of heart surgery in children, but of the patients, past and present, whose lives have been transformed. Besides the technology, the sociology of medicine has changed substantially since the 1950s – think of the atmosphere of children's wards. Other things have barely changed – consider the dread of kissing your child goodbye at the door of an operating theatre in any era. Children's heart surgery is often seen as a medical triumph; but, for all the successful operations completed, thousands of pioneering patients have gone before, perhaps facing their own uncertain futures. Today, we place great hope in the power of science. Many lives have been saved; but, sometimes, we ask medicine to do more than it can. By turns frightening, heart-wrenching and inspiring, Open Hearts is a powerful story of medical progress, hope and survival.

Genres: Nonfiction, History, Medicine

321 pages, Kindle Edition

First published March 17, 2016

About the author

Kate Bull qualified in medicine from Cambridge University and has specialised in the treatment of congenital heart disease at Great Ormond Street Hospital since 1979. Both highly regarded practitioner and academic expert in her field, she also has a particular respect for the experiences of patients and parents. She has interviewed many patients and their families and heard their stories.

Reviews

[Tauhid Itul]

Just finished the book. As a physician, we treat patients, they get well, live a healthy life. But what happen to a patient who is suffering from life threatening condition from birth? and after surviving from that horror, how will the patient lead a normal life?

Heart supply oxygenated blood to whole body. Every single cell use this oxygen, does its daily works and maintain normal physiological function. When the new born has a defective heart (due to congenital heart disease), the new born can not perform normal function and if not treated accordingly, soon will face death.

This book is about the patients who survived the complex surgery, lived their life to the full, deal with physical, social complications on their own terms. Also give the history of brave surgeons and anesthetists.

Though its not a textbook, every case is elaborated in such a way that any person not related to medical profession can understand easily.

[Emir Akel]

Open Hearts was a profoundly unique book on pediatric cardiac surgery. Most books on surgery focuses on the maverick surgeons who took calculated risks and saved the lives of many children (Dr. Barnard, Dr. Norwood, Dr. Blalock, Dr. Fontan, Dr. Lillehei). However, this book focuses on the first patients whom had the first surgery of their kind. From many stories given to the author in this book I found the following vital in the development of pediatric cardiac care:

1)Children were tied down to their beds in the ICU during their tantrums or as they struggled with the medical equipments which has given some patients PTSD later on life. Thid got significiant improvment by coming over nurse shortages as more nurses will have more time to engage with each patient without having to tie them down.

2)Family visits to the ICU were very limited during the early periods of the ICU. Thus this had some pyschological effects on patients who needed their parents by their side to help cope up with the traumatic experience they had during their ICU stay.

3)Surgeons generally didn't engage with their pediatric patients let alone explain each procedure to a child in a manner they would understand. This left traumatic distrust issues on children and even had the same psychological symptoms of children who were abused, since the child didn't understand what the doctors or nurses where doing to them in the ICU or cathlab. This is signifficantly improved now as each child is now treated better and given a better explanation on what each step of their treatment is (in a way that they would understand in a simple language).

4)The lack of the pediatric ICU specialty during the early 60s caused many children to be hospitalized in the adult intensive care wards, where nurses generally treat the children as "small adults" - which is a terrible mistake as their metabolism is highly different - and this lack of pediatric specialty caused many non-surgical fatalities post operatively, this was resolved as more pediatric ICUs were developed and pediatric staff were trained.

These mentioned above are vital developments in that were requires to decrease fatalities and PTSD caused post operatively. The book does also however, mention the great developments in cardiac surgery like the first Cross Circulation operations, the first Fontan operation for patients with Hypoplastic Left Heart Syndrome (HLHS), the developments regarding the bypass machine and anaesthetics as well as life saving procedures in the field of interventional cardiology. This book was a highly informative read and a unique one focusing on both the pioneering surgeons and pioneering patients.

[Melanie Johnson]

I think this is a great book for a congenital heart patient or the parent of one, because there is a LOT of technical information about the various surgeries. Some of the history is fascinating; however, this book is hard to read for the layperson and gets tedious at times. For a certain audience, it would be a great and important read.