Survival. To most parents, the impending delivery of an extremely premature infant is frightening, and their initial concern almost always focuses on the likelihood of infant survival. One recent study reported that the survival rate for infants at <23 weeks’ gestational age was 0 and at 23, 24, and 25 weeks, the rates were 15%, 55%, and 79%, respectively. Assessments based solely on best obstetrical estimate of gestational age do not allow for the impact of other factors, while those based on birth weight (a more accurately determined parameter), don’t fully account for the impact of growth restriction. The use of the NICHD estimator allows the consultant to estimate the impact and interaction between gestational maturity, weight, and the other identified critical factors. While extremely helpful as a starting point, at least two important cautions should be considered in individual cases. First, birth weight has to be estimated for purposes of antenatal discussion, although reliable estimates are often available from ultrasonographic examinations, assuming a technically adequate examination can be performed. If this information is not known, gestational age estimates for appropriate for gestational age (AGA) fetuses can be roughly converted as follows: (i) 600 g = 24 weeks; (ii) 750 g = 25 weeks; (iii) 850 g = 26 weeks; and (iv) 1,000 g = 27 weeks. Second, there may be important additional information in individual cases that will significantly impact prognosis, such as anomalies, infection, chronic growth restriction, or evidence of deteriorating status before birth. Clinical experience should be used to guide interpretation of the impact of such factors.

For antenatal counseling, it may also be important to interpret published data in the light of local results. The best obstetrical estimate of gestational age may vary between institutions, and local practices and capabilities may significantly affect both mortality and morbidity in ELBW infants. Within each institution, practitioners should agree on the gestational age at which an infant has any hope of survival.

In discussions with parents, we attempt to reach a collaborative decision about what course of treatment would be best for their baby. We advocate attempting resuscitation of all newborns who are potentially viable, but recognize that the personal views of parents regarding what might be an acceptable outcome for their child will vary, and thereby impact decisions about offering resuscitation. Currently, we inform them that resuscitation at birth has been technically feasible at gestational age as low as 23 2/7 and 23 5/7 weeks and a birth weight as low as about 500 g, but we recognize that evolving evidence in some centers suggests that this may change in the future. In an individual case, the superimposition of medical problems other than prematurity may make survival extremely unlikely or impossible even at higher gestational ages. In counseling parents, we stress that within these parameters, delivery room resuscitation alone has a high (but not absolute) chance of success, but that this in no way guarantees survival beyond these early minutes. Studies have confirmed our experience that decisions based on the apparent condition at birth are unreliable in terms of viability or long-term outcome. We also note that the initiation of intensive care in no way mandates that it be continued if it is later determined to be futile or very likely to result in a poor long-term outcome. We assure parents that initial resuscitation is always followed by frequent reassessment in the NICU and discussions with them, and that intensive support may be appropriately withdrawn if the degree of immaturity results in no response to therapy, or if a catastrophic and irreversible complication occurs. Parents are counseled that the period of highest vulnerability may last several weeks in infants of lowest gestational ages. Once all these components are discussed, we make a recommendation regarding an approach to initial resuscitation.

If parents disagree with this recommendation, we first attempt to resolve differences by ensuring that they understand the medical information, and we understand their views and concerns, as well as their central role in determining appropriate care for their child. Almost always, a consensus on a plan of care is reached, but if an impasse continues, we seek consultation from the institutional Ethics service (see Chap. 19).

Morbidity. Care decisions and parental expectations must be based not only on estimates of survival, but on information about likely short- and long-term prognosis. Before delivery, particular attention is paid to the problems that might appear at birth or shortly thereafter. We explain the risk of RDS and the potential need for ventilatory support. In our NICU, all infants of 24 weeks’ gestation require some ventilatory support; at 25 to 26 weeks, this proportion drops to 80% to 90%; at 27 to 28 weeks, approximately 50% to 60% of infants require ventilatory support. In our institutions, this usually means mechanical ventilation, but continuous positive airway pressure (CPAP) use beginning at or shortly after birth is an alternative that is being used more
frequently. We also inform parents of the likelihood of infection at birth as well as our plan to screen for it and begin empiric antibiotic therapy while final culture results are pending.

During prenatal consultation, we generally avoid giving parents detailed information on every potential sequelae of extreme prematurity because they may be too overwhelmed to process extensive information during this time. We do specifically discuss those problems that are most likely to occur in many ELBW infants or will be screened for during hospitalization. These include apnea of prematurity, intraventricular hemorrhage (IVH), nosocomial sepsis (or evaluations for possible sepsis), and feeding difficulties, as well as longterm sensory disabilities. We make a point of briefly discussing the risks of retinopathy of prematurity and subsequent visual deficits and the need for hearing screening and the potential for hearing loss. These complications are not noted until late in the hospital course, but we find that giving parents some perspective on the entire hospitalization is helpful to them.

Parents’ desires. In most instances, parents are the best surrogate decision makers for their child. We believe that, within each institution, there should be a uniform approach to parental demands for attempting or withholding resuscitation at very low gestational ages. The best practice is to formulate decisions in concert with parents, after providing them with clear, realistic, and factual information about the possibilities for success of therapy and its long-term outcome.