By regular contributor, Darline Turner-Lee, BS, MHS, PA-C
Book Review: Fragile Beginnings
Fragile Beginnings by Adam Wolfberg, M.D., is a deeply personal account of the events surrounding the birth of his daughter Larissa at 26 weeks and the emerging technologies that are being developed to save such fragile infants. Dr. Wolfberg examines the question, should such fragile infants be saved and what are the ethical issues associated with the research and development of treatments and the care of these tiny infants.
Interestingly, the book reads more like a novel. It reminded me of the books by Robin Cook, you know, Coma, Brain, Fever, etc…Had this book been called “Baby” I would have had to wonder if Dr. Wolfberg really was the author! I say this because while this book is factually accurate, it is quite easy to read and I personally found it engaging. I found myself wondering what happened to Larissa, so I kept reading.
The strength of the book comes from the great wealth of information presented. Dr. Wolfberg provides in-depth information on neuroplasticity, intraventricular hemorrhage in premature neonates, the research and development of treatments for premature infants with these disorders, discusses the ethics surrounding treating these conditions such as whether or not it is prudent to develop treatments for children who may have what many consider “sub-standard” lives.
What provided interest were the background stories about Kelly, Dr. Wolfberg’s wife, as well as back stories about the various health care providers. All of the doctors and health care professionals mentioned were three dimensional. They were introduced and their integral role in Larissa’s care was described via their personal histories, trials and tribulations. We learned Jason Martin became a doctor in an effort to try to find a cure for his brother who had a spinal cord injury. We got to know Dr. Steven Ringer, the head of the Brigham and Women’s Hospital NICU and about his passion for saving babies.
Although I enjoyed reading the book, I kept asking, what is the point the author is trying to make and who is his intended audience? Is the intended audience other doctors or health care professionals? Is it a tribute to Brigham and Women’s Hospital NICU? Is it a piece outlining how far medicine has come in the care of fragile infants?
The book is called Fragile Beginnings and initially I thought that the book would focus more on Larissa and the Wolfberg family as they struggled to cope with Larissa’s prematurity. Yet, Larissa wasn’t really the star. The main focus was on the medical advances that have been made in neonatology, the doctors making those advances and the ethics behind the advances.
As such, this is not a book that I would recommend to new parents who recently gave birth to a premature infant. In my opinion, those parents need information on how to cope with this unexpected situation and resources to help raise and develop their child. This book does not at all address such issues. Towards the end of the book, we see Larissa developing and progressing, but we really have no idea how her parents found the physical therapists, occupational therapists and other ancillary health care personnel that helped care for Larissa.
We get a glimpse into the fact that the family lives in a town that provides a lot of social services. If I were a parent of a preemie, I would want to know how I go about finding out what services are available in my town and getting my child connected. This isn’t addressed.
I think parent readers would also prefer more details about what Dr. Wolfberg and his wife were going through on an emotional level. How about a chapter describing how they explained what happened to Larissa to her sister and their responses? How about a chapter describing how his wife Kelly coped with delaying her own career to care for such a fragile child? This is truly a difficult situation for many moms and while Dr. Wolfberg once mentioned Kelly’s irritation that he was able to continue this career while hers was stalled, a mom reading this chapter may be wondering how Kelly may have dealt with any resentment or feelings of guilt for having resentment at all.
As a parent of a fragile infant, I would want to know how Larissa’s medical issues specifically affected her development. Was she significantly delayed? When did she walk, talk and learn how to feed herself? If I was a mother of a severely premature infant, I would want to know how and when Kelly potty trained Larissa. If I were a new parent of a premature child, born around the same time as Larissa, I would want the “uncut” version of everything that I am about to encounter; how to find specialists, best ways to soothe the child, how and when to recognize when you can teach your child a new skill, etc.
We see Larissa as an infant in the NICU, then she goes home, and then we see her at about a year and then again at ages 5 and 9.
What happened in the interim? At what age did she start school? Did she begin in any sort of special education classes? Is she behind cognitively? Did she learn to speak on time? There are too many gaps to get a real impression of what it’s like raising a fragile infant. We as readers are left with too many inferences to make.
One other point of concern is that Larissa seemed to get the “creme de la creme” treatment. Describing Larissa being rushed to the NICU, Dr. Wolfberg talks about how the staff overrode the elevator asking other hospital guests to vacate while they whisked her away “for they were taking care of one of their own”. It made me wonder, is this the standard treatment that all premature infants receive? Larissa was the daughter of one of the OB/GYN residents. It doesn’t get much closer than that! (Except if she was the child of a neonatology resident!)
Would my child have received the same treatment if she had been born at Brigham and Women’s Hospital? Would a child whose parents were on Medicaid? Would a Medicaid child have the same access to care and services that Larissa had? Larissa’s family lives in Newton, MA, an affluent suburb of Boston known for its excellent schools and social services. I know this because I grew up there. But could a family that didn’t come from a town with the abundant social resources hope for the same outcome for their child? Would they have been informed about the program at the University of Birmingham? Would the family have been eligible or have had the means to attend? I would have preferred to have learned more about the particular services that Larissa had access to, what they contributed to her development and as a parent I would have liked more information on how to access those services in my hometown.
Overall, the book is well written and informative. However, I’ll recommend it like this; if you want to read a well written book about prematurity and advances in neonatology and brain injury, this is a really good book. If you want a book that reads like an episode of Grey’s Anatomy, you will probably like this book. If you are a parent of a premature infant, you may want to read this book to gain some understanding of why your child’s neonatologist is making the recommendations and decisions s/he is making.
But if you are a parent of a premature infant trying to cope with they myriad of emotions, while at the same time wondering what types of care your child will need, where to find services and providers, how to find out what is available in your area and how to access those services, this is not the book for you as it doesn’t answer any of those questions.