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

Saroj Saigal (Goodreads Author)

4.64 · Rating details · 11 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 acc ...more

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Published October 2nd 2014 by FriesenPress

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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

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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 i ...more

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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

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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. ...more

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About Saroj Saigal

Saroj Saigal

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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 t ...more