A Disease of Neonatology

Abstract

Patrick Kennedy Bouvier died at the age of 39 hours in the Neonatal Intensive Care Unit of Boston Children’s Hospital on August 9, 1963. His gestational age was 34 weeks, and his weight was 1,860 grams. He was part of that 50% neonatal mortality in the United States during those years. Today, that mortality is below 2% in the same country. Defeating premature death was urgent. But today, the concerns of those of us working in neonatal intensive care are different.

It is necessary, once again, to exercise prudence and not aspire to similar figures with dissimilar tools. First, we must resolve the issue of the technological and human resources that delay us from achieving comparable results to those seen in other regions. This is not a matter of optimism or pessimism—it is an ethical matter.

Another element of singular importance is the cost of neonatal intensive care, whose astronomical figures burden the lives of families. I do not have data on these costs in national public hospitals, but the scarcity of material resources does not allow for a reduction in mortality and instead increases morbidity.

There is an even greater concern resulting from perinatal intensive care, which includes the enthusiasm of neonatologists: the new condition generated by the drive to continue lowering the fetal age of viability, along with advances in technology that, if used without reflection, may become excessive—the Dysmaturity Syndrome.

The viability of the human fetus is not a record number, not a medal or decoration, not applause or recognition. No, it is none of that. The human cell has biological limits; it has its own rhythm. Organ formation and function follow sequential transformations that mark differentiation and function. When this sequence is interrupted, it alters the subsequent phase of development. Reprogramming produces structural changes at the tissue and organ levels, creating risks for the surviving fetus—some known, perhaps most unknown—and attempts to reverse these developmental injuries postnatally may not yield the desired effect, or may even result in Pyrrhic victories. This biological limit is not determined by my skill, nor even by technology; it is determined by the cell and revealed over time—far beyond the duration of a neonatal hospitalization.

Interruptions to this sequence of fetal development create gaps or prolonged pauses in development that cannot be recovered, no matter how much enthusiasm and dedication we invest in the care of the extremely premature and ill infant. The premature interruption of gestation is an interruption of the fetal developmental sequence; the earlier it occurs, the greater the restriction of normal development.

At the limits of viability, these considerations are rarely made; instead, only survival is considered—a flawed approach to measuring success in neonatal care. Optimizing outcomes requires rethinking preventive therapies from within the maternal womb, such as the use of antenatal corticosteroids—powerful epigenetic modulators: which ones, how much, and from when; as well as the methods of rescuing the premature infant, both pharmacological and technological, often relying on the assumed plasticity of the brain or the cellular growth of vital organs such as the lungs, heart, and kidneys—growth that will now be altered, programming disease and affecting years of life.

The neonatologist must confront the evidence that science provides, accept reasonable probability, and not expect to make the impossible possible. As early as 1970, Hans de V. Heese warned: “Our purpose should not only be to reduce mortality, but more importantly, to ensure survival with intact motor and mental functions.”