By Dave Andrusko
Editor’s note. This repost of a very encouraging story that appeared exactly one year ago in NRL News Today is a blessing on many levels. I hope you enjoy it.
With two sisters who are nurses and a niece on her way to becoming a physician’s assistant, I am keenly aware from their stories that physicians can be both quite heroic and insanely busy but also quite human. No matter how well trained and well read, they can be susceptible to the same stereotypes and mythologies (just at a higher level) as the rest of us.
In our areas of especial concern, let me talk about two: the overly negative predictions about children prenatally diagnosed with Down syndrome and babies born prematurely. These bleak attitudes are amazing stubborn.
In the U.K., they have the notorious “Ground E,” which allows abortion without age limit of babies prenatally diagnosed with fetal anomalies as minor as cleft palates. However, the most common victims caught up in this genetic net are babies with Down syndrome. In the past ten years the number of late term abortions carried out past 24 weeks gestation on unborn children with Down syndrome had doubled in the UK.
In Iceland, where testing is widespread, “We have basically eradicated, almost, Down syndrome from our society,” as one geneticist told CBS News in 2017. How? By eliminating all children who would be born with an extra chromosome!
And when it comes to the way we think about preemies, I ran across a terrific opinion piece this morning that appeared in the Washington Post written by Sarah DiGregorio, the author of “Early: An Intimate History of Premature Birth and What it Teaches Us About Being Human.” The headline is provocative and, alas, all too true: “Doctors are pessimistic about premature babies. Despite the evidence, we all are.”
DiGregorio is not blind to the difficulties babies born prematurely can face. But she has first-hand experience of listening to the neonatologist read her a lengthy list of all the conceivable difficulties her baby girl could endure when delivered at 28 weeks in 2014 .
“The message was clear,” she writes, “Being born early was very, very bad, and our baby was likely to be fundamentally damaged, even in ways we would never definitively know.”
What the neonatologist missed in his “laundry list” was “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.”
Much of the rest of her very important and very much worth reading “Perspective” deals with how incredibly pessimistic physicians have been about babies born prematurely going back a hundred years and persisting in many quarters until today. Here is one illustrative paragraph:
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.
Alas, as you might anticipate, there remains considerable angst about cost (is the baby “worth it”)z and “disability”:
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.
Near the end, DiGregorio explains how we can begin to change the narrative:
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.
One other thought. DiGregorio references but doesn’t address in depth the Elephant in the room: how many preemies are not aggressively treated because a long-faced doctor gives a “laundry list” of possible problems so lengthy and so lacking in hope that parents are “guided” into “letting the baby go.” We just don’t know.
She concludes with a keen insight about the “ 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.