On Adam Wolfberg’s “Fragile Beginnings” and a Related Article

On Adam Wolfberg’s “Fragile Beginnings” and a Related Article

Wolfberg, A., 2012. Fragile Beginnings: Discoveries and Triumphs in the Newborn ICU. Beacon Press, Boston; 179pp.

http://adamwolfberg.com/

http://www.beacon.org/productdetails.cfm?PC=2239

In opening the book we immediately learn that “Half a million babies are born prematurely in the United States every year”. According to the National Institutes of Health (NIH), this makes one premature baby out of every eight babies born. And approximately 25,000 of them are born extremely premature, less than 27 weeks’ post-menstrual age (PMA); of those, about 25% surviving infants suffer severe neurological damage, 25% moderate impairment, and 50% judged to be mildly impaired or normal.1

While a resident in obstetrics and gynecology, Dr. Adam Wolfberg’s wife delivered, after only 26 weeks of pregnancy, a premature baby girl. The event prompted the start of a frantic personal periplus to learn and comprehend the most subtle intricacies of the medical conditions his daughter and every premature newborn might be facing: cerebral palsy, diminished intelligence, gastroschisis, retinopathy of prematurity (ROP), among others.

Taking advantage of both his medical and former journalistic backgrounds Dr. Wolfberg describes, in an engaging narrative, his personal experience both as father and clinician; his storyline encompasses the first months of his daughter as a patient in the Newborn Intensive Care Unit (NICU), and follows her into her toddler years. Based on her story, and those of other young patients admitted in the same unit, Dr. Wolfberg details potential complications, available treatments, and possible outcomes in premature newborns.

The book is a combination of personal narrative of the events that unfolded around his daughter, an up-to-date narrative of the internal functioning of a NICU, and the ongoing research lines in the field along with a historical account of NICU’s development over the years. With it, he introduces several clinicians and the research they are pursuing in an attempt to overcome critical situations and improve premature newborns’ health care. Dr. Wolfberg also presents, illustrated with several poignant examples, ethical and legal dilemmas of common appearance regarding certain diagnosis and prognosis that health care providers and families have to surmount as caretakers of these special patients.

The book offers an awesome and comprehensive portrait of the convoluted world of premature newborns and its intricacies: the difficulties that treatment entails, the specialty care that families might need, as well as an insightful account of certain type of decisions, sometimes painful, which also might need to be acknowledged; decisions that often have to be made lacking the time to properly evaluate and weigh their importance because that is usually overshadowed by urgency.

Without mentioning them (they are always invisible) the book (and especially the related article briefly addressed below) promotes the importance of the interpreters’ role as cultural brokers:

• In providing the necessary cultural background for the clinicians to understand to a maximum extent the patient’s family judgment and beliefs, so they can better address and explain all pertinent medical issues and prognosis needed for the family to make appropriate informed decisions.

• In facilitating the necessary medical cultural background to the patient’s family to help them understand the position and recommendations of the medical providers.

When the language is missing, communication is broken. Thus, a comprehensive and detailed understanding of both the patient’s cultural and religious background, and that of the culture of medicine, is required from the interpreter to bridge the language barrier and the undoubted cultural gap to provide the most necessary missing links for the dialog between patient and provider to profitably take place.

References:

1Kaempf-JW et al., 2009. Counseling pregnant women who may deliver extremely premature infants: medical care guidelines, family choices, and neonatal outcomes. Pediatrics 123(6):1509-1515;

[Free Online Access: http://pediatrics.aappublications.org/content/123/6/1509.full.pdf+html]

This article documents that “the majority of neonatologists seem to agree that NICU care at weeks’ PMA or more is highly advisable (even mandatory), but that compulsory NICU care below 24weeks is viewed as unreasonable or inadvisable at the most.” Therefore, the authors “do not recommend NICU care for infants born at <25weeks’ PMA, principally because the change of NICU death or significant neurologic damage injury is generally 50% or more, and it seems neither reasonable nor fair to insist on resuscitation of infants who may have enormous long-term health issues that may not help the family cope with or resolve.” The authors recognize tremendous cultural and religious diversity that influences what families consider to be moral decision-making:

 Religious or faith-based beliefs that conflict are particularly difficult to resolve.

 What is judged as right or wrong is subject to every manner of cultural influence and social construction.

 Parents do change their initial inclinations regarding resuscitation.

Again, it is in situations as such where the role of the medical interpreter as a cultural broker is most important, as the need for a medical interpreter generally reflects the void in cultural understanding due to the patient’s cultural transplant from his/her culture of origin. In many cases, this provides a feeling of helplessness that is commonly magnified by the absence of direct communication: a missing common language; a deep ravine that interpreters have to overcome by bridging the cultural gap at the same time they are breaking the language barrier.

Additional information regarding a Newborn ICU can be found at: Brandon NICU at the University of Michigan Health System.

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