Authors

  1. Kendall, Alta B. MN, ARNP, NNP-BC

Article Content

Adam Wolfberg engages the reader's mind on the very first page of his book, Fragile Beginnings, and by page 2, he captures the reader's heart. He begins by describing the procession of a newborn and family leaving the hospital at the time of discharge-mom in a wheelchair cradling a swaddled infant, flower arrangements, luggage, baby gifts-all to be loaded into the car for the journey home. A stark contrast follows as Wolfberg transitions to the scene that occurs when his wife Kelly is discharged following the much-too-early birth of their third daughter, Larissa:

 

Twice before, Kelly had ridden that wheelchair holding a healthy newborn. Understandably, she thought that having a child was a relatively uncomplicated affair: a couple tries to get pregnant and eventually succeeds. Nine months later, a healthy baby is born, and after a few days' recuperation, they go home together. But after Larissa was born, Kelly rode the wheelchair across the lobby alone.

 

At the time Wolfberg was a resident just 1 year out of medical school, yet he knew all too well that his tiny daughter was not physiologically ready to continue growth and development outside her mother's protective uterus. From this perspective he details, in layers of succinct description, the story of his daughter's preterm birth, revealing the terror and uncertainty faced by parents of extremely low-birth-weight babies. These infants are born at the lower limits of viability, and Wolfberg is cognizant of the gravity of the situation when Kelly's preterm labor cannot be stopped at 26 weeks' gestation. He struggles to control his own fears, while supporting his wife and advocating for their fragile newborn. With the birth of this child, he and his family begin to experience personally the world where he practices professionally.

 

Within the very earliest moments of her life after birth, little Larissa suffers the potentially devastating brain bleeding known as intraventricular hemorrhage, and Kelly and Adam begin the rollercoaster ride that the experience in the neonatal or newborn intensive care unit (NICU) often entails. Although ultrasound and magnetic resonance imaging provide intricate details of alterations in brain structures, they provide far less specific information in terms of projecting outcomes for infants afflicted with ventricular swelling and parenchymal tissue destruction. Wolfberg is a physician, but he is Larissa's father first, and he wrestles with questions as to how much should be done to promote her survival, given her precarious health status. He wonders how Larissa's life might look in a few years, in a reality of potential cognitive deficits and learning delays, and of treatments, wheelchairs, assistive devices, surgeries, and the sheer monumental effort necessary in order to perform the usual tasks of daily living. He asks himself perhaps the ultimate gut-check question: Will she someday want to know "Dad, why did you do this to me?"

 

Fragile Beginnings is a compelling read about Larissa's journey in the NICU, but it also takes us into the fascinating territory of neuroscience and brain plasticity. In a child or adult, brain damage similar to that experienced by Larissa would be overwhelmingly catastrophic and almost certainly fatal. However, during gestation-and another way to think about preterm birth is that it is a state of continuing gestation occurring in an extra-uterine environment-the brain is completing rapid growth and development. In other words, the brain is in a high state of "plasticity," referring to the ability of the central nervous system to acquire alternate pathways for sensory perception and motor skills. What we are beginning to understand is that it is possible that brain damage occurring as a result of early birth-related injury may be mitigated by therapies and treatment that promote this ability of the brain to initiate a certain amount of adaptive healing.

 

Dr Wolfberg provides a volume that is readily accessible by a wide variety of readers.

 

NICU staff of all levels will appreciate his straightforward explanations of neurodevelopment, including elegant and understandable explanations of germinal matrix development and function as well as the nuances of neuroplasticity. NICU parents, past and present, will also appreciate his discussion of mystifying lingo and procedures and will treasure the compassion and insight he shares. As a result of reading Fragile Beginnings, NICU parents will be better informed as they participate in care and treatment decisions involving their infants. Wolfberg gifts his readers with a message of hope, perseverance, and potential promise in applying research-generated evidence in the neurodevelopmental support of infants born preterm.