The Power of Storytelling In The NICU
Jae Kim, MD, PhD / May 2018
When I was first taught that infants born with meconium at birth were at high risk of inhaling the awful chunky pea soup-appearing amniotic fluid, and that it was our job to eliminate this risk, it made entirely good sense to me. How could we possibly permit a newborn to inhale such a liquid?
The story as told to me was that newborns were getting incredibly sick from inhaling the thick liquid, and time was of the essence to prevent it from happening. We connected the presence of meconium with the horrible meconium aspiration syndrome that ensued, and this reinforced our beliefs.
It began even before the infant was out. Holding back the delivering infant was key. Mothers were told to stop pushing, and the obstetrician anxiously suctioned out any meconium contents from the mouth. That first breath must not occur, or else the powerful first breath would create a pulmonary inhalation catastrophe.
We avoided stimulating these infants, laid them to the table, and swiftly tried to pass a tube into their throats without any stimulation. We then proceeded to connect the endotracheal tube to a meconium aspirator to remove whatever chunks we could from their large airways. Amazingly we would then do this again if we thought the aspirated liquid was significant enough (sadly many of us cut our teeth learning to intubate in this period).
But a different story emerged. It led us to a different conclusion, that most if not all of the aspiration was already occurring in utero and that we were probably delaying critical minutes by not initiating spontaneous respiration. With time the story changed further, such that not even those that were non-vigorous were truly benefiting from such aggressive toileting. We moved from a highly invasive management to an expectant one based on the evidence and the story we told ourselves was happening.
Story impact to clinical care
It seems more evident to me that our patterns of clinical care depend a lot on the stories that we tell ourselves. These narratives that run through our head are powerful drivers of our actions.
I sometimes feel dismayed with trainees on rounds when house staff rattle off the management plan for a baby. I’ll ask innocently how they got to that conclusion, but their answer is quite hollow. “This is how we do things here,” is what their senior or fellow told them. “This is what is described in the house staff manuals.” There is no story that follows.
Perhaps it is my love of physiology that drew me to have a mechanistic understanding of the things we see in medicine. Physiology is, after all, about stories. The maturation that we as teachers encourage is to build up rationale for our decisions, to build up the stories that put the complex pieces together, and give us confidence in the way we care for and manage sick babies.
We help encourage the creation and telling of stories that reinforce our medical beliefs. We are academic storytellers entrusted to teach others to make and retell the important stories.
The story of nutrition
What stories do we tell ourselves in nutrition? What stories do we make up that drive our nutrition care?
An early one (which was entirely excusable looking back) was the belief that preterm infants were too fragile to take any food into their gut because of their extreme immaturity. Infants were simply not fed for weeks. We believed that feeding their gut early would lead to terrible consequences. These were founded in some logic as infants were very malnourished back then, and metabolically deranged because of another belief that they could not tolerate PN solutions initially, and that this too would have to start very slowly.
Looking back, the better story we needed to tell ourselves was what they were receiving in utero was more appropriate given their unparalleled metabolic rate. The fetus was receiving an incredibly rich meal in protein, fat, and sugars. Providing them a comparable intake of amino acids, lipids, and dextrose was essential to prevent catabolic effects. Feeding their gut early now made sense with a new tale of gut atrophy and permeability if we did not feed. Feeding now, we were told, offered properties to mature their gut and help them adapt after all.
Sometimes our stories can run ahead of ourselves too. The belief that early feeding can be good was born out of clinical data, but most early feeding was represented by feedings started on day three of life or beyond. Immediate feeding of mothers milk or formula right after birth is much more limited.
A story of oral care
A curious trend that has piggybacked onto the rise of mothers’ milk and donor human milk is the use of colostrum as an oral care practice. People may be advocating for early colostrum care because of several story lines.
One, colostrum is a richer, denser form of mother’s milk and therefore can do no harm. It carries heightened properties of mother’s milk, and giving it to an infant to immunize them sounds safe.
Two, many don’t call it a feeding. By calling it oral colostrum care (OCC), we now can invoke a different mechanism of action. Colostrum is rich and potent with immunologic factors, and some components can be absorbed by the mouth. Evidence shows with OCC that certain milk elements such as Ig can be found in the infant’s urine. Giving 0.2 -0.4 mL of milk up to every two hours certainly sounds like there is enough to be swallowed to be a feed. But our story says that since we deliver it to the side of the mouth it is not a feed. Does this seem plausible?
Perhaps we don’t have enough data yet and perhaps our story needs revising soon. These prevailing stories mean that the administration of colostrum is now pervasive, and anecdotally more than half the units are practicing this, even though the evidence for benefit or harm is sparse.
A story of intake
Our unit for more than a decade established that 160 mL/kg/day was determined to be full feeds. Years prior to that we thought that 150 mL/kg/day were full feeds. Unfortunately, I can cite too many examples of infants that make a huge leap in intake the moment we release their ceiling of intake, often taking in more than 200 mL/kg/day. That suggested they were being throttled down in what they needed.
Why might that be the case?
The first is that we often play a story that emphasizes intake and forget about the importance of energy consumption or expenditure. It forgets that infants are not all the same and that they may have different appetites and triggers to achieve their growth homeostasis.
Our belief that infants follow the textbook or our smartly placed numbers may be holding our ability to deliver the best care.
The microbiome is a new area where many stories are being told. We now recognize that there is a microbiome everywhere we look. The oral microbiome, the nasal microbiome, the microbiome of the skin, lung, gut, milk, etc.
We believe that these communities of organisms are such that they require preservation of natural ecosystems on our earth. We tell a good story that the gut microbiome of the preterm infant is immature and prone to dysbiosis with an abnormal flora that may confer disease. We tell the story that probiotics with such a positive name must be doing good. We believe that probiotics are the solution to restoring the gut with a healthy microbiome.
These stories need to be tempered by emerging evidence. For example, the last systematic review puts in question the value of probiotics for those less than 1000 grams. The most robust benefits appear to occur in the size greater than 1000g. Our zeal for probiotics may be jumping ahead as safety concerns have been raised with the quality of probiotic products out there.
Storytelling or tall tales?
As humans, we are built for stories. They provide the narrative upon which we feel comfortable with the world around us and with the decisions that we make. There are, however, some lessons we can learn from the stories that we hear and tell:
- Most of what we know now will be wrong in the future.
- Have a story that provides the rationale for your decision.
- Listen to the other stories that others have. You may be surprised to find that their story is better!
- Look for other stories. Good observations can help you find the truth.
- Just like naming a baby, it is important how we name things or practices. This can change our narratives.
What stories stand out in your NICU? Tell us in the comments below!
About the Author
Jae Kim is an academic neonatologist and pediatric gastroenterologist and nutritionist at UC San Diego Medical Center and Rady Children’s Hospital of San Diego. He has been practicing medicine for over 23 years both in Canada and the USA. He has published numerous journal articles, book chapters, and speaks nationally on a variety of neonatal topics. He is the Director for the Neonatal-Perinatal Medicine Fellowship Program at UC San Diego and the Nutrition Director of an innovative multidisciplinary program to advance premature infant nutrition called SPIN (Supporting Premature Infant Nutrition, spinprogram.ucsd.edu). He is the co-author of the book, Best Medicine: Human Milk in the NICU. Dr. Kim is a clinical consultant with Medela LLC.