The New England Journal of Medicine —
August 10, 2000 — Vol. 343, No. 6

Extremely Preterm Birth — Defining the Limits of Hope

I had a kind of blind faith. I believed in the collaboration between the firm will of my one-pound-twelve-ounce daughter and the expertise of modern medicine. Of course, there was more than a bit of random luck involved, too.
— Wendy Wasserstein (1)

Despite an increase in the frequency of premature birth, (2) new techniques, including surfactant-replacement therapy and increased use of antenatal glucocorticoids, have led to continued improvement in the survival of extremely premature infants in the 1990s. (3,4) Most follow-up studies of survivors have been limited by small samples, reliance on referral to a tertiary care center, limited assessment, and incomplete follow-up. (4) These limitations have led to varying estimates of the rates of normal development and handicap among these infants and of the burdens of caring for them. In addition, these limitations have hampered public-policy discussions about ethical and economic responses to this new cohort of survivors and have contributed to confusion in antenatal counseling and delivery-room management of these medically fragile patients. (4,5,6) The study by Wood et al. in this issue of the Journal (7) extends the results of previous studies by reporting the outcomes of all pregnancies that ended between 20 and 25 completed weeks of gestation and neurologic and developmental status at 30 months in 92 percent of the surviving infants in a large, population-based birth cohort. How will this study help physicians and parents?

In the absence of biologically reliable predictors of outcome, decisions on care for extremely premature infants have historically fallen between the inflexible extremes of mandated nontreatment and mandated full treatment by relying on individual evaluation by parents and physicians. Most studies suggest that infants born before 26 weeks of gestation who survive stay in neonatal intensive care units for more than 4 months at a cost that averages $250,000 per infant. (8,9) In the United States, third-party payers have questioned the wisdom of such expenditures, but courts have consistently reaffirmed the rights of parents to determine the treatment of their newborn infants. (10,11)

Wood et al. report that the most common outcome of pregnancies that end between 20 and 25 weeks of gestation is stillbirth or death before admission to a neonatal intensive care unit (79 percent), the cheapest outcome, followed by death before discharge (12 percent) and survival to discharge (8 percent, with <1 percent dying after discharge but before 2 1/2 years of age). Among the survivors at 2 1/2 years of age, roughly half had some disability (about half of these had severe disability), and half had no disability. These findings will help inform parents about their baby’s chances for survival, normal function, and handicap and will make it possible for insurance companies and courts to compare the outcomes of this technology with other expensive procedures. Because of the substantial morbidity among these infants after discharge and their frequent need for specialized educational services as they grow older, (4) the rates should also be used by health care and education planners to estimate the need for services in populations with known rates of extreme prematurity.

For parents, having an extremely premature infant is an unexpected and undesirable hazard on the emotional roller coaster that begins with conception. Parents begin pregnancy with hope for their child, based on their own experiences and leavened by denial that anything bad could happen to their baby. When an extremely premature delivery is threatened, physicians counsel parents about the possible outcomes. Both obstetricians and pediatricians have acknowledged the importance of providing information about outcomes to parents and the need to respect their wishes concerning treatment. (5,6) The physician's attitude is also an important factor in parents' expectations. However, because these infants represent less than 1 percent of all live births, most parents lack the personal experience and intellectual background to interpret and personalize the data on outcomes that their physicians provide. Instead, parents use hope and denial to interpret the limits imposed by statistics.

To the physician, parents may appear to be changing their opinion about what medical support should be provided immediately after birth or in the neonatal intensive care unit. The recalibration of hope and denial to accommodate the possibility of extremely premature birth and the problems of the surviving infant has been studied, as has parents' perception of other childhood illnesses. (>4) These studies suggest that parents' understanding of an extremely premature infant's prognosis may be based more on their own background and beliefs than on valid statistics about the outcomes of similar infants. (4) Whether an extremely premature infant survives with or without disability or does not survive, the factors that determine parents' coping style require the same kind of quantification that Wood et al. provide for disability.

The study by Wood et al. suggests two goals for future research and public policy. First, in order to reduce the frequency of extremely premature birth, prevention strategies must be based on fundamental investigation of the genetic, infectious, nutritional, and environmental causes of premature delivery and must be translated into clinical practice. For example, will the Human Genome Project permit the identification of high-risk couples (taking into account both the paternal and maternal contributions to the risk of premature delivery) and the modification of interactions between genotype and environment to reduce the rising frequency of premature delivery? Second, public policy should emphasize increasing families' access to individualized information on risk, rather than the promulgation of a single policy by courts or insurance companies to fit all situations. This individualized approach permits interpretation of the meaning of scientific progress by each family and has contributed to four decades of improving outcomes for infants born prematurely. (3,4)

When faced with difficult questions for which physicians have no good answers, families define for themselves the limits of hope and live with their decisions. The data on outcomes from the study by Wood et al. are important in defining the limits of hope for parents who are confronted with extremely preterm birth. However, these data provide no greater insight into the recalibration process that permits parents to cope with uncertainty, guilt, hope, and denial than do birth weight, gestational age, sociodemographic characteristics, or ethnic background. Understanding the richness and resilience embodied in parental coping strategies might improve outcomes for both families and infants as much as the technological advances of the 1990s.

F. Sessions Cole, M.D.
Washington University School of Medicine
St. Louis, MO 63110

Footnotes:

1. Wasserstein W. Complications. The New Yorker. February 21 and 28, 2000:87-109.

2. Joseph KS, Kramer MS, Marcoux S, et al. Determinants of preterm birth rates in Canada from 1981 through 1983 and from 1992 through 1994. N Engl J Med 1998;339:1434-9.

3. Vohr BR, Wright LL, Dusick AM, et al. Neurodevelopmental and functional outcomes of extremely low birth weight infants in the National Institute of Child Health and Human Development Neonatal Research Network, 1993-1994. Pediatrics 2000;105:1216-26.

4. McCormick MC. Conceptualizing child health status: observations from studies of very premature infants. Perspect Biol Med 1999;42:372-86.

5. Doron MW, Veness-Meehan KA, Margolis LH, Holoman EM, Stiles AD. Delivery room resuscitation decisions for extremely premature infants. Pediatrics 1998;102:574-82.

6. Pinkerton JV, Finnerty JJ, Lombardo PA, Rorty MV, Chapple H, Boyle RJ. Parental rights at the birth of a near-viable infant: conflicting perspectives. Am J Obstet Gynecol 1997;177:283-8.

7. Wood NS, Marlow N, Costeloe K, Gibson AT, Wilkinson AR. Neurologic and developmental disability after extremely preterm birth. N Engl J Med 2000;343:378-84.

8. Tyson JE, Younes N, Verter J, Wright LL. Viability, morbidity, and resource use among newborns of 501-to 800-g birth weight. JAMA 1996;276:1645-51.

9. St John EB, Nelson KG, Cliver SP, Bishnoi RR, Goldenberg RL. Cost of neonatal care according to gestational age at birth and survival status. Am J Obstet Gynecol 2000;182:170-5.

10. Kraybill EN. Ethical issues in the care of extremely low birth weight infants. Semin Perinatol 1998;22:207-15.

11. Avery GB. Futility considerations in the neonatal intensive care unit. Semin Perinatol 1998;22:216-22.

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