Prenatal tests are increasingly being used to pressure parents into either aborting their babies or letting them die after birth, yet babies diagnosed with some genetic abnormalities can live for years or even decades with proper medical treatment.
Prenatal testing includes noninvasive DNA tests and ultrasounds. Currently, these tests check for trisomy 21, better known as Down syndrome, trisomy 13, and trisomy 18. While Down syndrome is not considered lethal, doctors usually tell parents that trisomy 13 and 18 are “lethal” or “fatal,” leading parents to conclude that abortion is their best option.
The problem is that “diagnosing an unborn infant with a lethal anomaly is challenging because there is no universally accepted definition of a lethal or fatal fetal anomaly,” University of North Carolina pediatrics professor Dr. Martin McCaffrey wrote in Ethics & Medics. (Emphasis in original.)
“Conditions that once were described as lethal, generally a result of our failure to provide any supportive medical care, have come to describe conditions which may be compatible with months, years, and decades of survival,” he explained. Forty to 60 percent of infants with trisomy 13 and 18 who are properly treated survive their first year, and many live even longer. Their lives are not without challenges, of course, but they are hardly guaranteed to be “nasty, brutish, and short,” to borrow a phrase from Thomas Hobbes.
Negative Neonatologists
That is not, however, how many doctors see it. In a 2016 survey, about half of neonatologists and obstetricians recognized that trisomy 18 is not an automatic death sentence, yet just 16 percent of neonatologists and eight percent of obstetricians agreed that children with trisomy 18 could have “meaningful” lives.
Not surprisingly, then, doctors tend to offer parents of babies diagnosed with trisomy in utero the grimmest of prognoses. McCaffrey summarized the findings of a 2014 American Journal of Medical Genetics study:
Parents with prenatal trisomy diagnoses report being told by providers that their “child was incompatible with life (87%), if their child survived, they would live a life of suffering (57%), would be a vegetable (50%), would live a meaningless life (50%), would ruin their marriage (23%) or would ruin their family (23%).” Parents also report that not only were they offered abortion, 61 percent felt “pressured” to abort.
Aside from abortion, parents are frequently presented with what appears to be the only other viable option: perinatal hospice. This, McCaffrey pointed out, creates
a self-fulfilling prophecy. If physicians say a condition is lethal, it becomes lethal. When parents are counseled that a prenatal diagnosis is fatal, and offered no hope for supportive medical interventions, they are left to choose between abortion or perinatal hospice. With a livebirth followed only by hospice care, a quick death is inevitable.… The decision not to provide any supportive medical care to infants prenatally diagnosed with trisomy 13 and 18 perpetuates the fallacy that these are lethal disorders. Lethality begets lethality.
Positive Parents
Curiously, while doctors tend to have negative views of children with trisomy, parents who have actually had a child with one of these disorders are much more optimistic, according to a survey of 187 parents whose children with trisomy had died. McCaffrey, quoting the book The Experience of Families, noted that 89 percent of these parents had a positive view of their child’s life, 98 percent said the child had enriched their lives, 68 percent reported the child had a positive effect on the parents’ relationship, and 83 percent claimed they would either birth another child found in the womb to have trisomy or forgo testing altogether.
Forgoing testing would save parents from being pressured to abort or let their newborn die. After all, if a baby is discovered to have a disorder after birth, he is evaluated and treated as if he had a chance to survive, giving his parents time to decide what course of action to pursue. If he is diagnosed in the womb, his near-term death is treated as a foregone conclusion, so little is done to ensure that he is born as alive and well as possible.
Moreover, prenatal testing is hardly the slam-dunk proof of fetal abnormalities that the medical profession would have parents believe. In 2022, the New York Times reported that prenatal tests for chromosomal disorders are so unreliable that some of them have false-positive rates of 60 to 90 percent.
Pro-life Prescription
By taking the test results as gospel and extrapolating from them that a child will have a very brief life — or, if he lives longer, a painful and meaningless one — observed the Colson Center’s Shane Morris,
too many healthcare providers are functioning like self-appointed eugenicists, dictating to parents which little lives are worth living and which are not. This perpetuates misinformation around children with chromosomal and other disorders, all of whose lives, however long or short, are precious in the sight of God.
Instead of doctors’ making value judgments based on incomplete information, McCaffrey recommended “that physicians fulfill their duty to offer parents informed consent.” In other words, they should be honest about what they know and what they don’t know and make parents aware of all their options, not just those involving the death of their baby.
It is vitally important, McCaffrey asserted, that “we honor the dignity of these infants, pursuing reasonable possibilities for life, not preoccupying ourselves with how best to end a life we decide is not worth living.”
