Disability strikes parents differently. The weight of it depends on the nature of their newborn's handicap. When the defects are obvious and clearly diagnosable, the blow comes swift and pitiless—no matter how gently the doctor, midwife, or social worker delivers the news. In these cases, the problem is terrible but simple. It becomes far more complicated when the child's condition is not immediately apparent, when tests are inconclusive, when the pediatrician who examines the infant before discharge from the hospital finds nothing alarming. Then the doctor who discovers that "something is wrong" faces a choice: depending on training and temperament, some doctors avoid alarming the parents, tell them to wait "a little longer," while others speak plainly about the child's handicap.
The blow to parents is severe, but it brings relief by ending the anguish of uncertainty
The blow to parents is severe, but it brings relief by ending the anguish of uncertainty.Yet beneath this question of human compassion or irresponsibility lies another, more concrete problem—one with graver consequences.
Many motor handicaps of neurological origin are now treatable, or at least manageable, if treatment begins as early as possible.
One of the most renowned centers for this earliest intervention is the Vojta clinic-school in Rome, where nearly three hundred children with neuromotor disorders pass through each year. We asked about their experience with how parents discover their child has "problems"—and what happens because of when or how they learn it.
Jarka, who has worked at the center for sixteen years, is hard on doctors—neonatologists and pediatricians, a shrinking minority thankfully—who fail to investigate thoroughly and promptly communicate their concerns to parents the moment something appears wrong. She has seen too many children arrive too late, often because the pediatrician, through carelessness or a wish to spare the parents' feelings, said only that the child "was slow to develop."
According to the Vojta specialists, at least a third of children with neuromotor disorders can improve significantly, provided that treatment—consisting of precise stimulations and movements (physiotherapy)—begins as early as possible.
In Germany, Jarka points out, systematic neurological screening is performed on every child before discharge from the hospital. It is neither complicated nor expensive.
Here, parents often bring children at eight months or even later, by which time the abnormal movement patterns have become entrenched. They've noticed the child is "different"—moves differently, doesn't open his hands, can't hold his head, stiffens in the bath.
True, things have improved in recent years. Fifteen years ago, three-year-old children still came here. But among doctors, awareness in this field remains incomplete.
Whoever tells parents the diagnosis faces an additional burden: choosing words. Some words terrify
Whoever tells parents the diagnosis faces an additional burden: choosing words. Some words terrify.Recently a desperate couple arrived at the center with their one-year-old, unable even to roll over. At one month old, they had noticed he was stiffer in their arms than his older brother. The pediatrician had reassured them: nothing serious. Then, as other signs of "difference" appeared, came the long trail of tests—ultrasound, CAT scans, electroencephalograms, specialists. Irreplaceable months were lost.
Driven by the therapeutic necessity of intervening as early as possible, the Vojta center never hides the diagnosis from parents. The blow is violent. But always, afterward, they are grateful.
In delivering a diagnosis, certain words terrify: one is "spastic." Here too there is a problem of knowledge, a broader cultural problem: many words about handicap, misused and often flung as cruel insults, no longer carry a precise technical meaning—however grave—but instead carry a weight of condemnation. Whoever informs parents faces an added challenge in choosing language carefully.
Poorly informed doctors, or those who hesitate to speak plainly about a child's handicap "so as not to take away hope," fuel the desperate and costly pilgrimages of parents abroad, searching for that "revolutionary method" which, whatever its limited results, might already exist in their own city.
Newspapers and radio and television feed these desperate hopes and "journeys of hope" abroad with stunning carelessness and irresponsibility.
The best help—psychological and material—for parents already burdened so heavily comes from serious, complete information from pediatricians, neonatologists, and neurologists about possible therapies, their limits for different handicaps, and where they are available. The lack of such knowledge, or worse, the unwillingness to strip away a hope known to be false, actually abandons parents to that endless search—specialist after specialist, sometimes faith healer after faith healer, in Italy and abroad—a search that exhausts the lives of so many already stricken parents.
by Sergio Sciascia, 1984
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