Death, Severe Impairments Still Common for Tiniest Preemies

Nicola M. Parry, DVM

March 28, 2019

Extremely preterm infants born weighing less than 400 grams (0.9 lb) are at high risk for significant morbidity and mortality, according to data published online March 25 in JAMA Pediatrics.

"[Y]et with active treatment, survival to discharge and to 18 to 26 months' [corrected age (CA)] are possible," write Jane E. Brumbaugh, MD, Mayo Clinic, Rochester, Minnesota, and colleagues.

"Among the 19 infants in the 2008 to 2015 birth cohort who completed follow-up evaluation (10% of liveborn infants; 21% of actively treated infants), 14 (74%) had neurodevelopmental impairment."

Because low birth weight (BW) infants have a higher risk of morbidity and mortality, BW is an important predictor for survival. Indeed, BW may guide decisions to resuscitate extremely preterm infants.

According to Brumbaugh and colleagues, the mortality rate for infants with a BW less than 500 grams (1.1 lb) was considered to be almost 100% in the 1980s. Although this assumption is no longer considered accurate, little is known about the outcomes of the smallest extremely preterm infants.

Therefore, the researchers conducted a retrospective multicenter cohort study to determine the rate of survival to discharge among infants born weighing less than 400 grams who received active treatment, defined as any form of potentially lifesaving intervention after birth.

The study included 205 (121 girls, 84 boys) extremely preterm liveborn infants born between 2008 and 2016, who had a gestational age (GA) of 22 to 26 weeks.

Nearly half (101 [49.3%]) received active treatment at birth, and 26 (12.7% of all infants [95% confidence interval (CI), 8.5 - 18.9] of the 205 overall survived to discharge; Twenty-six (25.7%) of the 101 actively treated infants [95% CI, 17.6 - 35.4]) either survived to discharge home (n = 25) or were still hospitalized at 1 year (n = 1).

Among infants who received active treatment, survival rate improved with increasing GA, rising from 16.7% (95% CI, 6.4 - 32.8) for those born at 22 to 23 weeks' GA, to 32.4% (95% CI, 18.0 - 49.8) for those born at 25 to 26 weeks' GA (P < .001).

All 26 infants who survived had received active treatment at birth.

In contrast, all 104 infants who did not receive active treatment died, 103 (99%) within 12 hours of birth. The main causes of death were immaturity, respiratory distress syndrome, and severe intracranial hemorrhage.

For longer term outcomes, the researchers evaluated the subset of infants born between 2008 and 2015, allowing for follow-up assessments at 18 to 26 months CA.

Of the 184 infants in the 2008-2015 cohort, 90 (48.9%) had received active treatment at birth, and 19 (10.3% of the cohort; 95% CI, 6.3 - 15.7 [21% of the actively treated infants in the cohort; 95% CI, 13 - 31]) survived to 18 to 26 months' CA and completed follow-up.

Of the 19 surviving infants, 14 (74%) had moderate or severe neurodevelopmental impairment (NDI) at 18 to 26 months' CA, and 14 (74%) had multiple morbidities (including growth problems, pulmonary problems, vision or hearing impairment, and cognitive problems).

Two infants from the 2008 to 2015 birth cohort died after discharge home, and 2 were lost to follow-up.

The researchers acknowledge the limitations of their study, including its focus on live births. In addition, because only a few infants survived to follow-up, the outcomes may not be generalizable, they note.

Nevertheless, the results of this study do provide updated information about the care and outcomes of the extremely preterm infants.

"As practice is evolving in the active management of the most premature infants, the results may inform counseling and perinatal practice for those who care for expectant mothers and the smallest extremely preterm infants," Brumbaugh and colleagues conclude.

In an accompanying editorial, John D. Lantos, MD, director of pediatric bioethics at Children's Mercy Kansas City in Missouri, emphasized four types of concerns raised by treating such tiny premature infants.

"One is that treatment only prolongs dying and causes pain," he writes. "A second is that high rates of survival with NDIs suggest that, even for survivors, treatment should not be considered beneficial."

A third concern relates to offering treatment as an option to parents. In general, parents tend to prefer more treatment for these infants than clinicians believe is appropriate, and may not fully understand the complexities and stress involved in caring for a child with severe NDI.

The fourth concern focuses on distributive justice in healthcare and the cost-effectiveness of treating extremely premature infants. Care in the neonatal intensive care unit is expensive, says Lantos, and most infants who weigh less than 400 grams at birth and survive have disabilities.

Compared with infants who survive without disabilities, the dollars per quality-adjusted life-year (QALY) for those with disabilities thus increase, and the cost-effectiveness of treatment decreases. However, if cost-effectiveness is used to limit access to treatment, Lantos also stresses the need to be straightforward about the value assigned to life with disability.

Taking into account these four concerns, the approach to managing these tiny premature infants should consider both facts and values.

"A process of shared decision making should help parents understand the prognosis and help health care professionals understand parents' values and goals," Lantos concludes. 

"Through that process, physicians and parents together should be able to arrive at treatment decisions that reflect assessments of what is best for the infant and family."

This study was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Center for Research Resources, and the National Center for Advancing Translational Sciences. Brumbaugh has disclosed no relevant financial relationships. One author has reported receiving salary support from the National Institute of Child Health and Human Development. One author has reported receiving royalties from UpToDate. One author has reported serving on the board of directors of MEDNAX. The editorialist has disclosed no relevant financial relationships.

JAMA Pediatr. Published online March 25, 2019. Full text

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