Every month so far there have been a lot of bad memories, but there have also been some good ones, funny stories. I’ll carry with me probably forever. This month there have only been bad memories and worse memories. Moreno and his steadily increasing head circumference; the wasted, dying preemies hanging on much longer than they should be allowed to because of all the machines we have to use on them; the bigger kids with PFC [persistence of the fetal circulation]; the brain-dead baby with the abruption; these were terrible, terrible things. I’ve been finding that I just can’t defend myself against them. It’s been just brutal.
I don’t want to make this sound too sappy, but I knew I was in trouble when I cried in the hospital last week. Iris, the other intern, has been crying just about every day, but last Thursday I had been up the whole night before with this PFC’er who had done really poorly, and when he finally died, I just couldn’t take it anymore. I went into the bathroom, locked the door, and just cried my eyes out. I’m really starting to fall apart. That was the first time I’d cried all year. I know most of the other interns have cried, but I kind of prided myself on the fact that I could control myself. Not this month.
Maybe sometime in the future I’ll be able to come back to this and fill in some of the blank spaces I’ve left, but I can’t do that right now. I need a nice vacation. I think I’ll take my vacation in the West Bronx emergency room over the next four weeks.
I’m going to sleep. Maybe when I wake up, things’ll start being funny again.
Bob
FEBRUARY 1986
Mark Greenberg and Andy Baron worked in ICUs during February, and both had experiences caring for patients who were being kept alive thanks to technological advances that had been developed over the past few years. It’s always been true that technology has run way ahead of ethics in medicine. With every advance that’s been made, be it the development of antibiotics, the iron lung, present-day respirators, chemotherapy and radiotherapy for cancers, or the ability to transplant organs, physicians have been able to take discoveries made in the laboratory and apply them to humans. The immediate result of these advances has been that patients who the week before would surely have died have been given the opportunity to survive, at least for some period of time. But we’ve often learned that survival may not always be the best outcome for the patient or for society. The question of whether these fruits of medical technology should be utilized has to be addressed. In many cases, answering this question can be more difficult than developing the technology in the first place.
In no place is this truer than the neonatal intensive-care unit. Although there has always been interest in the very premature baby, until the 1960s these infants were considered little more than curiosities. Rather than being cared for in specially designed intensive-care units where all their life functions were meticulously monitored, these babies used to be warehoused in circuses and freak shows, and exhibited to the public for a price. If they lived for very long, it created more interest. If they died, usually because of respiratory failure, it meant only that they needed to be replaced.
Unlike most other medical specialties, which gradually evolved into existence, neonatology had a sharply demarcated beginning, largely the result of a specific event. In August 1963, Patrick Bouvier Kennedy, the premature son of President John and Jacqueline Kennedy, died of respiratory distress syndrome at Boston Children’s Hospital. For a few days, an intense media spotlight was shone on the special problem of babies who were born too soon. Although, sadly, this event ended with the death of the infant, it resulted in millions of dollars of national grant funding being devoted to research into the special problems of the premature. And therefore the death of Patrick Bouvier Kennedy led to neonatology as we know it today.
The major advances in the field occurred early. By the mid-1970s, using respirators, intravenous medications and fluids, specially developed dietary formulas, and very aggressive care, it became technically possible to keep alive infants who were born as much as fourteen weeks prematurely and who weighed as little as twenty-eight ounces. Some of these infants did well; they’ve gone on to lead relatively normal lives. Most of the other survivers, though, have been left with significant physical and developmental problems: Some developed cerebral palsy and required orthopedic intervention and braces to help them walk but were otherwise spared; others were found to have suffered extensive brain damage and, in addition to cerebral palsy, were left with mental retardation and seizures; still others were so extensively damaged by the consequences of their prematurity that they wound up leading a vegetative existence, many residing in institutional settings. And so the question was raised, “Although technically possible, is any of this justified?” Neonatologists and medical ethicists have been struggling to answer this question ever since.