It is Friday afternoon after a long week of teaching, double-booking, and serial crisis interventions. My iPhone keeps lighting up with multiple messages about a family visiting from out west who wants to stop by the office to say hello. I am rushing. I do not recognize the name. I have a five o’clock appointment with the Provost. I ignore the messages. My secretary Peggy, however, persists.
When I return to my office in McKim at 4:45 pm, I find “the” family waiting outside my door, all smiles and excitement. I smile, shake some hands and register no recognition of anyone.
They introduce themselves: First, the older man. He is Sven Johnson who attended the University as a graduate student in medieval studies and has retired as Dean of Arts and Sciences at his state university. The older woman, Cassy Johnson, identifies herself as a pediatric social worker in the 1970s. Her voice sounds a little bit familiar as she presents the daughter, Susan, and her husband, Peter. I still do not recognize anyone. Medical student applicant, patient complaint, former patient, former colleagues, job applicant, major donor? I smile and invite them in, noting that I have another obligation in fifteen minutes.
As they settle down in my office, the mother looks around at the photographs and remarks with excitement: "You have not changed a bit! You sound the same. You look the same. You are still the same person who saved Susan’s life all those years ago. We tell that story over and over.”
Susan adds: ”Yep … your calls to my parents in the middle of the night became a legend. “
Aha, I think … a former patient! I direct my beneficent smile directly at Susan. She is tall, bright eyed and not obviously disabled or diseased. I relax and hope that my memory kicks in soon. She takes the wingback chair and starts to tell the family story. I begin to breathe and wait. I still am not remembering.
Susan starts: "I was just a tiny preemie in the Newborn Intensive Care Unit way back in 1974 with all those exchange transfusions … ”
Mother interrupts: “ … so little, so yellow, and so sick.”
Susan continues: “... and you saved my life. I have heard the stories over and over ... the calls in the night ... the transfusions ... the fear.”
So now I get the medical picture, a preemie baby with an immature liver and Rh incompatibility (the early days before Rhogam). And I remember the middle of the night conversations with families. “So the red cells are being destroyed, releasing hemoglobin. The hemoglobin breaks down into unconjugated, fat soluble, bilirubin. The bilirubin has to be conjugated in the liver by an enzyme named glucuronyl transferase BUT the enzyme needs glucose as a substrate. And the preemie is not nursing well. Once conjugated, the bilirubin can be "peed out" because it is water soluble.
Mother reports my middle of the night message: “The bilirubiin is getting higher. Time for another exchange transfusion, otherwise she may have brain damage."
Susan:” Yep, that funny “k” word ...”
“Kernicterus ... ” I interject, still struggling to conjure up an image from 35 years ago. I wonder to myself about when in 1974. It seems oddly relevant to place this episode temporally before or after my husband, Alan, was killed that September.
“Yes, that’s it ... kernicterus.” confirms Susan.
Mother reminisces: "Oh and I remember overhearing the residents say: ‘Don’t go near that bassinet. Nobody touches that preemie but Hostler herself!’"
Susan: " ... and I was in that body cast for weeks."
Mother to me: "Because you said her hip was slipping in and out."
“A congenitally dislocated hip ...” I fill in, thinking how we now correct the baby’s hip with a small, soft pillow and linen harness.
Susan: "And you worried so much that I might be brain damaged."
“That’s why Dr Hostler did the exchange transfusions … to get rid of the bad bilirubin.” Mother explains to Susan
I lecture a little. “… kernicterus describes the high frequency hearing loss, choreoathetosis and cognitive impairment that is secondary to the deposit of unconjugated bilirubin in the brain cells.”
“So what is an exchange transfusion, really?” asks Susan.
“In those days, when the bilirubin went over 20 mg/cc in the blood, we knew it was too high. So we did a double blood volume exchange transfusion through the baby’s umbilical vein ... to remove the dangerous bilirubin and to provide new red cells for carrying oxygen. It took about 2 to 3 hours to do an exchange transfusion, pushing blood through the baby’s bellybutton and then pulling blood out through the bellybutton ... all with a 25-cc syringe. “
The father looks at Susan, "We came back from our sabbatical in Europe when you were 16 months old, and Dr Hostler said that you were hearing okay and that you clearly did not have cerebral palsy ‘cause you were racing around the exam room... but we should watch out for math in third grade."
So I turn to Susan: "So how are you doing?"
"Well, I finished my PhD in Molecular Biology at Yale and remained there as a postdoc. I’ve been invited to join the faculty at Yale, but I may go out to UCSF to be closer to Peter …”
Peter has been a silent observer, but now chimes in: “I have a consulting company in the silicon valley, but most of my clients are in Asia.”
Susan continues: “... I may not be a candidate for the Nobel Prize but otherwise, I am doing great."
"It surely seems so." I say with a big smile, vaguely embarrassed that my only familiar connection remains her mother’s dialect.
There is a knock on the door and they prepare to leave. The Mother hugs me again and notes: "And you know ... you never sent us a bill ... for all those times in the middle of the night … and all those transfusions."
"Hmmmmm ... I think we called it professional courtesy in those days. Times have surely changed."