It is a good day so far—none of the 16 critically ill babies in the neonatal intensive care unit has coded or died. So far, the shrill electronic alarms for dying babies have been silent.
As the neonatologist on call, this gives me the opportunity to talk to Anna and Jake, Baby Milo’s parents. Milo peers up at them with big brown eyes as Anna leans over his crib and whispers to him. A small transparent plastic mask covers Milo’s tiny nose to help him breathe, and a cluster of saliva bubbles percolate between his lips. Despite a sleeve of tape securing his right hand, his tiny fingers tug the orange orogastric tube taped to his cheek.
Milo’s father, a brawny man wearing scuffed brown shoes, ripped blue jeans, a T-shirt, and a tattered Green Bay Packers cap, sits in a chair and nervously taps his knee while he stares with bloodshot eyes at the vital signs on Milo’s bedside monitor.
“Milo is adorable,” I say from the doorway. His parents look over to me as I step into the room.
“We think so,” Anna says with a smile.
“How are you both doing?” I ask. “Being in the NICU can be pretty stressful.”
Milo’s parents glance at each other and nod. Anna takes a seat next to Jake, who touches her shoulder.
I pull up a chair. “Can you tell me Milo’s story? How did you end up in the NICU?” I say.
“We were celebrating my birthday at a steakhouse,” Jake says. “Right after they brought our salads, Anna’s water broke.” Jake pauses, and glances at Anna. “We called the hospital and were told to get there right away.”
“Early in the pregnancy we were told Milo had a heart problem. Knowing that and with my frequent contractions, it made the hour-long drive on a cold winter night feel like forever,” Anna says. “We parked by the emergency department, but got lost in the hospital. After wandering the hallways for 20 minutes, we finally bumped into a nurse who took us to triage.”
“After an emergency C-section, Milo was hooked to a breathing tube, and soon we learned he had other problems, too.” Jake says and bites his lower lip. “It was scary. Real scary.”
When unexplained technical terminology leads to confusion.
Milo was born at a hospital miles from ours, 11 weeks prematurely with a congenital heart defect, polycystic kidney disease, a missing arm bone, esophageal atresia, and lung problems. He was transferred to our hospital the next day. He has been here for two months.
Suddenly, Jake looks me in the eyes and asks, “What’s the ‘Tetralogy of Flow’?”
“I’ll show you,” I say, as I draw a picture of Milo’s heart and explain the four main abnormalities.
“Yes, but what about the flow?” Jake asks.
“Flow?” I pause. I write out the words ‘Tetralogy of Fallot’ on the white board on the wall.
“Dr. Fallot is the person the heart defect is named after. His name is French so the ‘T’ is silent. It’s pronounced fah-low.”
“Oh,” Jake pauses and sits back in his chair. “I thought it was ‘flow.’”
I’m overcome by embarrassment as I realize that we as the medical providers have never clarified a diagnostic term we have used during prenatal counseling, numerous meetings with the pediatric cardiologists, and daily rounds with the medical team for two months in the NICU. Our team assumed the parents understood what we were saying because, after all, we said it.
A few days later I recorded myself saying “Tetralogy of Fallot,” using my normal speaking voice. I asked multiple nonmedical people to listen.
They all heard ‘flow.’
This is a mondegreen, a mishearing of something said or sung. It often occurs with the lyrics of songs such as Jimi Hendrix’s “Purple Haze,” in which “excuse me while I kiss the sky” is heard as “excuse me while I kiss this guy.” Medical mondegreens may be a way for laypersons to make sense of medical terminology. They represent communication shortcomings, which arise when we bombard patients and families with medical acronyms, abbreviations, and terms. Unaware of a patient’s or family member’s health literacy level, we may use technical terminology that creates a barrier we are oblivious to, one that results in confusion, frustration, and anxiety.
Supportive listening.
So while a term like ‘bilirubin’ may become a person’s name (“Billy Rubin”), a phrase like “we needed to bag the baby” may be misinterpreted as “the baby died and was placed in a body bag.” Whether a medical mondegreen or common medical jargon, we need to be aware of not only what we say, but how our words are heard and comprehended. One way to gain this awareness is by using an indispensable tool in medicine—a chair.
Listening remains an essential part of medical care. An intentional moment of supportive listening allows stories to unfold, questions to surface, and medical jargon to be explained. We are best understood not while standing outside a door or behind a computer screen.
It’s done face to face with not one, but two chairs.
By Ryan Michael McAdams, MD, neonatology division chief, University of Wisconsin Madison School of Medicine and Public Health-Madison
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