"Baby at Risk: The Uncertain Legacies of Medical Miracles for Babies, Families, and Society by Ruth Levy Guyer
( http://www.amazon.com/Baby-Risk-Uncertain-Legacies-Miracles/dp/1933102268/sr=8-1/qid=1170879288/ref=sr_1_1/104-6340677-2245540?ie=UTF8&s=books )
I highly recommend this book.
Ms. Guyer takes the reader on a journey, through time to learn how NICU's got their start, through the lives of NICU patients (preemies and high risk babies) and their parents and through the eyes of doctors and nurses who care for these patients.
She does a wonderful job of explaining laws and how they shape the NICU's of today. I was shocked at what I learned.
I have to admit that I also learned a lot more about neonatologists, intensivists and NICU nurses and how tough their job truly is.
This book is very honest and thought provoking. I hope it will find its way into the hands of all doctors, nurses, med students and potential parents. I also hope that people will take this new found knowledge and put it to good use.
**Side note... when I sat down to write this post I had every intention of writing a detailed review. After putting more thought into it, I decided that it would be better if everyone read the book without knowing much more than I wrote. I think if potential readers knew some of the topics that are covered, they may choose not to read it and then I wouldn't be doing it justice. Everyone, please be open minded when getting through the book. Your views may be different than the ones expressed in the book but they deserve to be given attention.
What a bonus to see some pictures of my "online friends".
After reading the book, please come back and tell me what you thought.
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4 comments:
If anyone is curious about Chris and Vic, Vic's story is on p. 128, including photographs.
My own experience with a Trisomy 18 baby and a hospital medical ethics committee is on p. 126.
On p. 127, I tell a story about a full-term baby who was being resuscitated aggressively, and the father saying, "If he's going to be messed up, Doc, you can stop now."
Ruth is an NPR correspondent, and you can hear her on some Sundays, doing All Things Considered. She also teaches ethics at Haverford and Johns Hopkins.
Re: collaboration between parents and doctors (or not), Ruth says:
" . . . when a child goes on to lead a difficult life---one of enduring pain, constant suffering, great disabilities---then the parents may continue to ask, and justifiably, how is it that none of the doctors who were dismissive of their preferences or the institutions that imposed these aggressive overtreatments on their child end up bearing any lasting responsibilities for the lifelong care of the child." (p. 40-41)
Chapter 12 talks about experimenting with babies (the title of the chapter). Like discussions we've had about evidence-based medicine, this chapter talks about the feasibility of clinical trials, and the seduction of pushing the limits of viability;and the imperative to innovate in the NICU. (p.105)
The chapters are punctuated with stories of ex-preemies, some very famous, like Sidney Miller in Texas. Helen's Ed is in the book.
Ethicists of the stature of John Lantos are featured. Legal cases (vs ethical principles) are discussed.
I love this book. It is not about the glories of the medical technology, nor about miracle babies. It is a balanced view of the ethical struggles that come with NICU territory. It honors the families who are living the outcomes. It asks the hard questions. It interviews the players and traces the history. There is something in this book for every one of us---certainly, there is validation of our feelings and concerns, discussed on these blogspots.
I, too, highly recommend this book, Baby at Risk, by Ruth Levy Guyer.
Chris and Vic (CAK)
Um... (she says as she covers her head and realizes that she is clearly not good at writing a book review)
Thanks Chris for writing a great review!
I bought 3 copies of this book and donated 2 of them. One of them I took to my nursing school library and let my OB instructors know that this book was available. The issues of prematurity are glossed over in nursing school. The text books we have that are new releases contain extremely dated information, such as babies born at 28 weeks have a chance of survival. UGH. Many babies born at 23 weeks have been "saved" (although not well) for 20 years. Even though the Baby Doe laws were addressed in one of them, it was in the context that together the parents and physician would decide on resuscitation based upon the child's suffering and risk of disability. .riiiight - that's exactly what's happen' in NICU's NOT. Double UGH.
To All:
Of COURSE I recommend this book! Ed's pictures are in it!!!
Chris,Terri w/2, and preemie experiment mom have said it all!
Anyhow, to change the subject slightly, the big news story of the day (other than Anna Nicole Smith) is that autism has been found to be (surprise, surprise) much more prevalent than previously thought.
I think now is the time to write letters to the editor and posts to the Internet message boards (I just posted at MSNBC) and tell them about the prematurity-autism link.
Onward!
Helen
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