Customer Reviews

Baby at Risk: The Uncertain Legacies of Medical Miracles for Babies, Families, and Society (Capital Currents)

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An outstanding, objective look at NICU history and philosophy, and a highly recommended backgrounder for anybody with a baby in the NICU or who works in a NICU. Once again, I wish I'd had it when my son was born, and I also wish I'd written it!

As a mother to two preemies, born at 25 weeks gestation, I found Ms. Guyer's book to be an accurate portrayal life in the NNICU and life after the NNICU. The majority of preemies do end up disabled. The outcomes presented in this book are accurate portrayals of the vast majority of children who are born with Extremely Low Birth Weights. All parents-to-be, especially those who are at risk of delivering prematurely should read this book. It should be required reading for every medical student and resident.

I was looking for a book on bioethics as I was writing an assingment for graduate school. I thought that this book would be anti-NICU but it really wasn't. I take issue with one review that gathers ALL NICU personel into one lump in taking care of these tiniest of tinies. I agree though, that just because we can, doesn't mean we should..HOWEVER, that being said, I am a NICU nurse not because I want to heroically save every tiny person that is born into this world, but to help these little ones in their greatest time of need. Don't fool yourselves into thinking that doctors and nurses make all the decisions for these preemies. Parents who refuse to let go do exist! Parents who have struggled to get pregnant and then want everything done...do exist. Parents who believe that because they are in the UNITED STATEs we can cure anything do exist. So while, we do go to extremes at times...it is never without thought, deliberation and might I add prayer. No one wants a baby to suffer..no one wants a parent or sibling to suffer ..that is never the intent of NICU care... say what you want...we do good things...and faced with the dilemma of NICU care or not..when it is an emergency..there is not a parent in the world who would not say "do something." This is quite different from those who know ahead of time that the infant will not make it...has a major lethal defect or is too little to live well...then I believe that perinatal hospice is the way to go...In the short 10 years or so since some of these children were born..there is no longer the secrecy of treatment..parents are well aware of each step along the way...given a chance for informed consent..and can and DO make decision in their childrens care....that being said..I thought the book was good, objective for its time, and through..and I WOULD and have recommended it for read in my own NICU.

I was a premature baby myself. I was born in the early 1960s, when NICUs were just getting started. I was six weeks premature and weighed five pounds. That's about four times more than many of the babies profiled in the book. Today, of course, a 32-week preemie like myself is hardly worth mentioning. I have no after-effects except possibly my tendency to lung infections.

This book profiles a number of "miracle babies" who were saved after being born very prematurely (at 22-26 weeks gestation) or who were very sick at birth and saved by dramatic surgical intervention and high-tech care. The point made is that for many of these babies, "success" as measured by the NICU staff, usually defined as a living baby who goes home, is quite different from what the babies' parents experience. The doctors and nurses don't have to deal with life-long care for children who are blind, deaf, retarded, autistic, or have cerebral palsy. The NICU staff also don't have to deal with family strain, resentful siblings, bankruptcy, and divorce resulting from the constant pressure of dealing with a severely handicapped child. The parents do. Yes, there are some babies who grow up to be happy and normal. But the percentage of lucky babies is smaller than most people imagine.

Today the treatment of ever-teenier preemies has become an industry in itself. The price to society has mounted steadily. Yes, it's only money. But when a million dollars is spent keeping a single preemie alive, that million dollars has to come from somewhere. If you cut doctor visits from 20 minutes to 15 minutes or reduce the number of nurses on a hospital floor, which are some of the standard cost-cutting measures, it takes a very, very long time to reach a million dollars. The cost of neonatal intensive care is one of the major reasons why health care is so expensive in developed countries, and particularly in the U.S. Health care in the U.S. is trapped in a spiral of diminishing returns as costs climb ever higher. My husband and I spend a very substantial chunk of our incomes on health insurance for us and our son. Are we getting our money's worth? I don't think so.

It is long past time for doctors to begin thinking about the place medicine should have in society, particularly high-tech medicine. High-tech medicine in general has surprisingly small benefits compared to its appalling costs. (For some specific examples of this, such as cardiac bypass surgery, see Nortin Hadler's book, "The Last Well Person.") There are plenty of countries around the world who have public health as good as, or in some cases even better than, the U.S., but pay a lot less for it. Having someone there to hold your hand when you are sick, which is the sort of touch usually eliminated for cost-cutting reasons in U.S. hospitals, is actually cheaper than high-tech medicine and is frequently more effective.

This book should be required reading for all expectant parents, who deserve to know about the hell that could be in store for them should their baby be born sick or early and receive the full panoply of high-tech treatment. Doctors and nurses who work in an NICU, a labor and delivery unit, or who deal with obstetrics should also read it.

This book was in the new book section of our local library. While my 3 year old was feeding books, one at a time, into the book return, my 1 year old pulled it off the shelf. I picked it up and while the boys were enjoying the library collection of books and puzzles I started reading a passage here and a passage there. Within 24 hours I had read the entire thing (including the acknowledgements). That is how compelling this book is. The writing is so sensitive and brilliant and the subject matter is so eye-opening. I am going to buy a copy for my doctor, my midwife, and everyone I know who works in the health field. Can I buy this book by the case?

I think this book is right on and makes everyone think. Families should have the final say in medical care for anyone in their family when they are unable to. For some people out here medicine has gone to far. Doctors should not have the ability to force medical care and sometimes expermential treatment on anyone.

Sometime life is about quality not quanity.