Goodreads helps you keep track of books you want to read.

Start by marking “Preemie Voices - Young Men and Women Born Very Prematurely Describe Their Lives, Challenges and Achievements” as Want to Read:

Other editions

Enlarge cover

Rate this book

Clear rating

1 of 5 stars 2 of 5 stars 3 of 5 stars 4 of 5 stars 5 of 5 stars

Open Preview

Preemie Voices - Young Men and Women Born Very Prematurely Describe Their Lives, Challenges and Achievements

Saroj Saigal (Goodreads Author)

4.56 · Rating details · 9 ratings · 4 reviews

The birth of a very premature baby is a shock for parents. The immediate anxiety about whether their infant will survive quickly leads to concerns about their child's future quality of life. In this inspiring and informative book, young people who were born weighing less than two pounds, three ounces provide candid and personal stories about their lives, challenges and ...more

Get A Copy

ebook

Published October 2nd 2014 by FriesenPress

More Details... Edit Details

Friend Reviews

To see what your friends thought of this book, please sign up.

Reader Q&A

To ask other readers questions about Preemie Voices - Young Men and Women Born Very Prematurely Describe Their Lives, Challenges and Achievements, please sign up.

Be the first to ask a question about Preemie Voices - Young Men and Women Born Very Prematurely Describe Their Lives, Challenges and Achievements

Lists with This Book

This book is not yet featured on Listopia. Add this book to your favorite list »

Community Reviews

Showing 1-26

Average rating 4.56 ·

Rating details

· 9 ratings · 4 reviews

More filters

Sort order

Start your review of Preemie Voices - Young Men and Women Born Very Prematurely Describe Their Lives, Challenges and Achievements

Sep 02, 2019 Kelly rated it liked it

Shelves: disability, medicine, science, science-communication, bioethics

3.5 stars.

I read this book partly for work—I do research on medical decision making, and am planning to soon start doing research on parents’ decision making for sick infants and other children—and partly out of personal interest, as I myself was born prematurely (10 weeks early) over 32 years ago. I was interested to see what this book, which was written by a leading Canadian neonatologist who has done decades-long follow-up on children born prematurely is aimed at parents of premature infants 3.5 stars.

I read this book partly for work—I do research on medical decision making, and am planning to soon start doing research on parents’ decision making for sick infants and other children—and partly out of personal interest, as I myself was born prematurely (10 weeks early) over 32 years ago. I was interested to see what this book, which was written by a leading Canadian neonatologist who has done decades-long follow-up on children born prematurely is aimed at parents of premature infants rather than at medical professionals or researchers, would have to say.

The bulk of the book is taken up with personal essays from 41 of the former preemies Saigal has studied, who were born between 1978 and 1982 and who all weighed less than 1000 grams (they were classified as “extremely low birthweight,” or ELBW). All of these people were born significantly before I was (I was born in 1986) and weighed much less than I did, and all but one was born at an earlier gestational age (more prematurely) than I was. I was very surprised by this, as I knew (both from my knowledge of my own experience, from my parents who are both doctors, and from readings I have done in the medical literature) how rare survival was even when I was born and even at my gestational age. A few of the essayists were even born at times considered to be the limit of viability now.

The essays are remarkable in giving these people a chance to tell their stories. From the variations in writing ability, it was clear that more than a few of them have intellectual impairments, but they still spoke very movingly about their lives and their experiences in the follow-up studies. Most, but not all of them, were extremely positive about their lives. In fact, I felt like more than a few of them glossed over problems in an effort to make the book “inspirational” or helpful to parents. I don’t think this was the fault of any one of the writers, but grouped all together I think they give a remarkable, but a bit too rosy picture.

The sections of the book written by Saigal and a few of her colleagues deal with the history of neonatology and the research data regarding outcomes for prematurely born infants and their families. They are written in a way that is accessible without seeming obviously dumbed-down, and I think they will in many ways be a big help for the families this book is aimed at. It’s remarkable to see how much neonatology has improved over the decades, and while the descriptions of Saigal’s team’s research methods were too simplified to be directly helpful to me in my work, there is a very long and detailed reference list that I’m sure I’ll use.

The main issue I have with the book—and I’m torn about just how big of an issue I think it is—is that the book is too positive. It mentions survival statistics briefly, but I don’t think it makes nearly clear enough how incredibly lucky the young people whose lives it chronicles are to be alive and to be as functional as most of them are—I say this knowing full well that I am also incredibly lucky to be alive and as capable as I am, though my story looks unremarkable compared to many of those contained here. That’s the main issue: the book makes the remarkable look commonplace, which I think runs the risk of giving people false hope. These people were born at a cutting-edge facility and cared for intensively long-term, which not all premature infants are lucky enough to have. I think too little is said about this in the book. And we only hear from the most functional ones, those capable of writing their own stories. Extremely brief mentions are made of those who died or were too severely disabled to participate in many of the studies, but I think, especially given how powerful a whole bunch of personal success stories one right after the other are, this could have been emphasized at least a bit more. There could have been at least one story from the parents of a child from the NICU cohort who is too severely disabled to write for themselves, hopefully still giving a positive message but making clear that it’s ok if your child can’t write for a book, their life can still be worthwhile. Or maybe a reflection from a parent whose child died, about what their experience was like. I think this would have brought some important balance to the project.

As I said, I’m torn about how much of an issue this is. I’m a living example of why having hope is important, as I did much better than the doctors predicted, just like many of the people profiled In Saigal’s book. I know that hope is important, especially because my parents have talked about how helpful a resource like this would have been to them when I was growing up. I would never want to take hope away, or dissuade parents from pursuing care for their sick children if they wanted to or their doctors advised it, especially because medical technology is miles ahead of where it was when the people profiled in this book (and I) were born. But I think giving hope and encouragement without context is unwise. I think this book doesn’t make that context clear enough. It is right to celebrate the remarkable progress that has been made in neonatology and the great work these doctors have done, as well as the remarkable successes of the people profiled in this book. But all that celebrating and success risks alienating parents whose children don’t do as well. I don’t know what the balance is, but I think this book is too far on the positive side. It occurs to me that this may have been deliberate, as a way to counter the dire predictions still often made by doctors about sick infants, what their futures will hold, and what their quality of life will be—the book mentions this phenomenon briefly a few times, and I know it is something my parents faced and many other parents of sick and disabled children still face. So maybe when being read by a parent who had already been told the numbers and given a gloomier picture in person by their child’s doctors, there would be more balance. It may have been written specifically as an antidote to that, which makes sense. But reading it in isolation, it felt too positive and rubbed me the wrong way a bit. I think its heart is definitely in the right place and it presents medical science very well, but let’s just say that before giving this to a family, I’d be careful to find out what they’d already heard from their child’s medical team, to make sure I didn’t give them too rosy a picture by recommending this book. It doesn’t tell the whole story, but maybe it’s not meant to. But it still made for somewhat uncomfortable reading. ...more

flag Like · see review

Dec 19, 2018 Tonya Giovinazzo rated it it was amazing

I greatly am honoured to be apart of such a wonderful book. Teaching many and myself what really goes on and how we all pulled through in the very early beginnings of the NICU and went on to lead full lives. This book shows the great dedication of everyone involved in running the NICU from the NICU staff to doctors, parents, families and us the tiny warriors on the front line....the preemies. We are so lucky to have such a wonderful place right in our city. Thank You for asking me to take part ...more

flag 1 like · Like · see review

Sep 28, 2017 Geoff Miller rated it it was amazing

As an adult born extremely premature in the late 70's, i have found this book a life-changing revelation. Prof Saigal's work has enabled me, for the first time, to directly compare my own survival with that of my cohorts.
This book allows the reader a glimpse into the hidden world of the issues surrounding pre-term birth, yet it also highlights the continuing triumph over adversity these preemies show. That the fighting spirit us preemies are so often credited with at birth, truly never leaves ...more

flag Like · see review

Jan 28, 2015 Bobbie Middlemiss rated it it was amazing

It was a joy to read the life stories, positive outcomes and of the successes of these now adult "extreme preemies". I think this book will be helpful to parents and families who must face the birth, and future, of a premature infant. "Preemie Voices" will give them hope rather than despair when worrying about the child's future and quality of life.

flag Like · see review

Terri Major-kincade rated it it was amazing
May 07, 2016

Kerri Machut rated it liked it
Jun 03, 2018

Kristy Diefenbaker rated it it was amazing
Jan 04, 2019

Seher rated it it was amazing
Nov 14, 2014

Graham Chance rated it it was amazing
Feb 02, 2015

Tami Ridenour marked it as to-read
Oct 31, 2014

Kathy Johnston-Duncan marked it as to-read
Feb 25, 2015

StephyB marked it as to-read
Sep 25, 2015

Kieara marked it as to-read
Oct 06, 2015

Ashley marked it as to-read
Oct 26, 2015

Tina marked it as to-read
Dec 05, 2015

Sherry Mabry marked it as to-read
May 11, 2016

Acacia marked it as to-read
Jan 11, 2017

Rose Harmon marked it as to-read
Feb 18, 2017

Brittany Jackson marked it as to-read
Mar 03, 2017

Ann marked it as to-read
May 08, 2018

Ope added it
Jul 17, 2018

Lisa Triezenberg is currently reading it
Nov 17, 2018

Dorna Hoseiny marked it as to-read
Feb 12, 2019

Katie added it
Sep 16, 2019

Janie Walborn marked it as to-read
Sep 26, 2019

Cait Wall marked it as to-read
Dec 02, 2016

new topic
Discuss This Book

There are no discussion topics on this book yet. Be the first to start one »

Recommend It | Stats | Recent Status Updates

Readers also enjoyed

See similar books…

Genres

Science

1 user

Health > Medicine

1 user

Disability

1 user

See top shelves…

About Saroj Saigal

Saroj Saigal

0 followers

Dr. Saroj Saigal obtained her medical degree in India and trained in newborn medicine at the universities of Edinburgh, McGill, and McMaster. She joined McMaster University as a neonatologist in the newly-opened Neonatal Intensive Care Unit in 1973. At the same time, she started the Neonatal Follow-up Program for premature infants, one of the few such programs in the country at the time, and was ...more

Books by Saroj Saigal

More…

Trivia About Preemie Voices - ...

No trivia or quizzes yet. Add some now »

See a Problem?

Preview — Preemie Voices - Young Men and Women Born Very Prematurely Describe Their Lives, Challenges and Achievements by Saroj Saigal

Preemie Voices - Young Men and Women Born Very Prematurely Describe Their Lives, Challenges and Achievements

Get A Copy

Friend Reviews

Reader Q&A

Lists with This Book

Community Reviews

new topic
Discuss This Book

Readers also enjoyed

Genres

About Saroj Saigal

Books by Saroj Saigal

Trivia About Preemie Voices - ...

See a Problem?

Preview — Preemie Voices - Young Men and Women Born Very Prematurely Describe Their Lives, Challenges and Achievements by Saroj Saigal

Preemie Voices - Young Men and Women Born Very Prematurely Describe Their Lives, Challenges and Achievements

Get A Copy

Friend Reviews

Reader Q&A

Lists with This Book

Community Reviews

new topicDiscuss This Book

Readers also enjoyed

Genres

About Saroj Saigal

Books by Saroj Saigal

Trivia About Preemie Voices - ...

new topic
Discuss This Book