It’s important that parents have the facts, and our doctor wanted us to know something true: Being born prematurely can affect a child’s health in many ways, and some of those complications can be fatal. The information he recited was medically accurate, though he probably inflated the likelihood of disability. (One benchmark is that, among babies born at 25 weeks, 13 percent develop a profound neurodevelopmental disability, and 29 percent develop a moderate one, according to data from the National Institute of Child Health and Human Development.)
The doctor’s laundry list also missed something important, something we really needed to hear at the time: The majority of babies born early, even very early, survive in good health. Their weeks, months and years ahead will not be easy. But there is also plenty of evidence for optimism.
Health-care providers have a well-documented and surprisingly durable pessimism about preemies. A 1994 survey in the American Journal of Obstetrics and Gynecology showed that doctors significantly underestimated their survival rates and overestimated their long-term disability rates. More than a decade later, a Pediatrics study of physicians, nurses and nurse practitioners echoed those findings, and showed that learning the true rates made doctors more likely to recommend resuscitation in theoretical borderline cases. Doctors are much sunnier about other patients: Research shows that internists and intensive-care unit physicians accurately assess the survival chances of adult patients admitted to the ICU.
This professional pessimism is matched by a broader cultural ambivalence. Our feelings about preterm infants are powerfully fraught. They suggest the thinness of the line between life and death; they symbolize the heights of human capability and the perils of going too far. We have two common narratives about premature infants: inspirational “miracle baby” stories and warnings of medical hubris. Record-setting “micro-preemies” who “defy the odds” and “fight for their lives” are regularly featured in tabloids and local TV broadcasts. Meanwhile, a 2017 Maclean’s article wondered, in the case of a very early birth, “to what extent should we intervene to prevent nature from taking that life before it becomes fully viable and conscious?” A Bloomberg Businessweek article, “Million-Dollar Babies,” asked, “Is there such a thing as too young?” Perhaps the general hand-wringing over such efforts made AOL’s chief executive blame the expensive medical care of “distressed babies” when he cut employee retirement benefits in 2014.
Our fascination with premature infants has always contained starry-eyed optimism about what could be done for them, along with uncertainty about whether the results were “worth” those efforts. That conflict goes back to the invention of the incubator in the 1880s, as Jeffrey Baker writes in “The Machine in the Nursery.” The medical establishment was slow to adopt the technology: The machine was expensive, and the value of the lives saved was seen as dubious. At the time, “Better Baby” contests were wildly popular, grading children on pseudoscientific traits like head measurements and awarding prizes to the “fittest” (i.e. large, able-bodied babies of white European heritage). Eugenicists argued that premature babies weren’t meant to survive; they would become a drain on society. The Buffalo Medical Journal wondered “whether the race as a whole does not suffer from the preservation of these weaklings to perpetuate their kind.” As a result, incubators remained a curiosity, touring world’s fairs and popping up in Coney Island as a boardwalk sideshow. People paid to gawk at preemies in their warm, glass-fronted boxes — they were objects of voyeuristic amazement, inspiring both hope and horror.
Even as cultural attitudes have progressed, some anxiety remains, often rooted in fears of disability. The 1985 book “Playing God in the Nursery” warned of “the dismal fate of a disturbing number of ‘salvaged’ babies’ ” who go on to lead “pathetic lives.” Two neonatologists called on fellow physicians to reexamine these beliefs in the Journal of Perinatology in 2013: “For the case of the preterm newborn, in particular, there may also be a sense that she is still ‘not meant to be here,’ ” they wrote. “If she survives with significant disability, the physicians might perceive that: But for our actions, there would be no disabled child.” The worry about gratuitous intervention, present in many medical decisions, seems especially acute when it comes to these patients.
All preterm babies are at increased risk for neurodevelopmental and learning disabilities when compared with term babies; the earlier the birth, the higher and more severe the risk. But these blanket assessments elide the fact that “disability” includes a whole range of experiences. Rigorous quality-of-life studies have found that as extremely premature babies grow into young adults, they rate their own health-related quality of life just as highly as a control group born at term. That includes former preemies who have a significant disability, such as cerebral palsy, vision problems or hydrocephalus — outcomes that providers seem to view more negatively than parents do. Neonatal providers often think that serious disabilities following from premature birth are worse than death, one study published in the Journal of the American Medical Association found. Most parents of babies born under 2.2 pounds feel differently — as do the grown ex-preemies themselves.
The truth is that the successful treatment of premature babies is one of the great triumphs of modern medicine. Before the widespread adoption of the incubator (and back when babies were usually studied by weight rather than gestational age), an 1883 study found, only about 35 percent of babies born under 4.4 pounds survived. But it isn’t just the incubator: With the subsequent development of respiratory support, intravenous nutrition and a host of other treatments, outcomes have improved dramatically. Infants born at the edge of viability, between 22 and 25 weeks, do, unfortunately, face substantial risk of death. But the vast majority of premature babies — more than 80 percent — are born after 32 weeks, and those born at 26 weeks and above are now quite likely to survive. According to the most recent available data from the Centers for Disease Control and Prevention, 87 percent of infants born at 26 weeks survive, and outcomes improve with each week of development.
Health-care providers are uniquely positioned to reframe our understanding of premature birth. They can answer parents’ questions, rather than leading with negative (and often hypothetical) predictions, and they can ground the discussion in the latest research. That evidence-based optimism might seep into the wider conversation. At the very least, it would make a difference to families, whose numbers are growing: More than 1,000 babies are born prematurely in the United States every day, and that figure has been rising for the past four years.
Families of premature babies are often deeply grateful to the providers who saved their children’s lives, and I’m no exception. The doctor who recited that laundry list may have just been following hospital protocol. He probably had the best intentions; he may have been trying to manage his own emotions and expectations. But our counseling session hit me so hard not just because it laid out all the worst-case scenarios: It also seemed to say that my daughter would not have a wide-open future. She would forever be measured against an ideal that she was born short of and could never grow into.
And yet, in the time since, I have never wished my daughter, now age 5, were different. I speak from a position of tremendous luck: Her IQ is “normal,” whatever that means; she has a pulmonologist monitoring her persistent asthma and receives physical and occupational therapies for minor motor delay. Some of her fellow former preemies have fewer challenges; others have far more. But I don’t contemplate who she may have been, and I can’t wish away those difficulties without, in some real sense, wishing her away, exactly as she is.
We have a powerful collective fantasy of newborn perfection. We associate babies with possibility; we believe they could grow up to be anything, do anything. The truth is that no one, anywhere, has unlimited potential, not even at the very start of their life. But that fantasy can lend early births an unnecessarily tragic aspect — a sense of brokenness, of damage, even before parents have a chance to hold their infants. And often, we have plenty of reason to hope.