Life As We Know It.

In September of 1991, James Lyon Berube was born with a chromosomal anomaly, Trisomy 21. This is a condition in which the twenty-first chromosome, instead of deriving one half from each parent, actually contains additional parental genetic material. This third component is probably the product of an earlier faulty cell division, a chromosomal nondisjunction.

For about a century after an English physician, J. Langdon Down, described certain clinical aspects of the condition, it was known as mongolism, the dubiously descriptive if not somewhat imperialistic term that seemed appropriate to his Victorian sensibilities. More recently, since the phenomenon is actually found in every race and ethnic group as well as in the higher primates, its human manifestation is now called Down (or, sometimes, Down's) syndrome. But this is not to say that the condition is of recent discovery: It has been recognized throughout all of history.

The significant change in the modern era is that, with antibiotics and sophisticated surgery, the survival rate for those afflicted has climbed significantly. For Dr. Down, 130 years ago, a newborn with the diagnosis could expect to live about ten years. Now the expectation includes adult years, middle age, and even old age.

Berube skillfully interweaves the story of Jamie's first months with astute discussion of the genetic as well as clinical aspects of his situation. Jamie was unbelievably lucky. In his first twenty days he barely evaded surgeries of the heart, throat, and stomach. Raising a child has never been easy. But when that nurture requires herculean effort (for example, feeding by a nasal tube inserted while listening with a stethoscope to be sure the tube has not found its way into the lungs rather than the stomach), and this is coupled with the knowledge that the future remains as inscrutable as ever, the most fundamental questions are put into play.

While the memoir of Jamie's first years is both moving and engrossing, the story is told within the larger context of an intelligent wonder. Berube marvels at the fact that Jamie's first seventeen days cost $30,000. Because the family was covered by a generously comprehensive employer-provided health plan, this cost never became a part of any consideration to treat or not to treat. As Jamie has gone on from that early merry-go-round of medical catastrophe to the daily round of routine pediatric care, early infant stimulation, day care, and, by now, education, he is the direct beneficiary of prodigious resources.

Berube writes with care and feeling about the fact that, when offered the possibility of an amniocentesis early in the pregnancy, he and his wife coolly rejected that diagnostic tool because at her age, according to the odds, the chances of actually conceiving and carrying to term a baby with Down syndrome were about the same as having a miscarriage induced by the procedure. Berube then embarks on a provocative analysis of the prolife, prochoice controversy, a discussion which produces difficult questions and few if any easy answers. Because this book is about one child in one family, neither prochoice nor prolife partisans will find anything like unequivocal support. From one who would not be in this situation had he and his wife elected amniocentesis and then the early abortion which probably would have been recommended, this is a valuable discussion. And to this reader it is not at all certain, had some diagnostic procedure revealed Down syndrome, that an abortion would have been secured.

But after all is said and done, there remains one very rocky constant. As Berube puts it in discussing the availability of health care in this country, "we're all in this one together." There is a persisting national habit of thought which assumes that "bad things" - birth defects, head and spinal injuries, misadventures of any kind - all happen to other folks. To put the discussion into the context of the debates on abortion or child welfare, for example, every child must have the resources necessary to thrive in an adequate and appropriate manner. In short, such things can and do happen to anyone.

Berube takes great care to demonstrate that a diagnosis of Down syndrome is descriptive but not necessarily predictive. At one time, a time that I certainly remember, such a diagnosis led to an automatic prescription, delivered with all the dignified vigor of lightning from on high: "This child must be institutionalized and the quicker the better." Then, in a wonderful manifestation of a self-fulfilling prophecy, this institutionalized population provided the data from which writers of textbooks blithely generalized to a prognosis for every child newly diagnosed with Down. And that prognosis, derived as it was from a socially and culturally deprived population, was grim indeed.

Any contemporary discussion of handicapping conditions that ignores the issue of abortion is naive. After all, since the introduction of amniocentesis several decades ago, it has been presented as a sure protection against the possibility of delivering a baby with Down syndrome. But the moral fact of the matter is really quite simple: While the possibility of securing an abortion is assured by order of the Supreme Court, in no case is an abortion mandated. Berube's concern is that parents like himself, who elect to forgo prenatal screening or who have the screening and then decline to abort a defective fetus, may some day be forced to decide differently in the name of "managed care." Having chosen a specific action, the parties concerned must still have the full resources - medical, educational, vocational, and residential - of this unimaginably rich society.

As he observes, "The danger [for children like Jamie] lies in the creation of a society that combines eugenics with enforced fiscal austerity....I do not want to see a world in which human life is judged by the kind of cost-benefit analysis that weeds out those least likely to attain self-sufficiency and to provide adequate 'returns' on social investments."

Berube concludes with the hope that he can set for Jamie a place at the table of the human family. In this hope, Jamie, like all other infants, has his rightful heritage. It is the most solemn obligation of all to guarantee that he, and every other child, will continue to enjoy that inheritance.

Harold Isbell is the translator of Ovid: Heroides (Penguin Books).