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Giant Steps: The Story of One Boy's Struggle to Walk.

Giant Steps: The Story of One

Boy's Struggle to Walk

by Gilbert M. Gaul

182 pages, St. Martin's Press.

$19.95

The young couple had no idea, the morning they drove to the hospital to give birth to their second child, that anything was wrong. Aside from the mother's brief bout with diabetes, the pregnancy had been relatively uneventful. Even as the obstetrician prepared for a Caesarcan delivery, and the expectant father positioned himself to record the birth on camera, the couple had every reason to expect that a normal, healthy child would be born in a matter of moments, much as their first child had been five years earlier.

It only took one momentary shake of the doctor's head to tell the father that something was wrong -- very wrong.

The mother didn't see it, luckily, but the father and the doctor did--a wet, purplish sac the size of an adult fist on the newly born boy's lower back. The doctor called it a cele. The baby's legs were deformed also--lifeless sticks from which two gelatinous feet dangled at sharp right angles. The diagnosis? Spina bifida.

Also called myelomeningocele, spina bifida is a congenital disease in which the neural tube in the embryo that houses the brain and spinal cord does not close completely. As a result, many of the nerves formed below that point end up either damaged or missing, resulting in lifelong paralysis. Although theories abound, no one really knows what triggers the disease. An estimated 13,600 infants in the United States were born with spina bifida between 1980-1987. Medical practitioners have recognized spina bifida for thousands of years, yet not much was written about it until the 1960s, and not until 1991 did studies conclusively show that daily folic acid supplements taken before conception can prevent most spina bifida cases.

Giant Steps is one man's account of his family's struggle to cope with one child's debilitating disease. Gilbert M. Gaul, a medical writer for the Philadelphia Inquirer, is a two-time Pulitzer Prize winner who won his awards for investigative reporting (1979) and, in 1990, for meritorious public service, a category traditionally awarded to institutions rather than individuals.

In his first book, Gaul recounts the story of his own son, Cary, born with spina bifida, who must immediately undergo an operation to close the lesion on his back. If Cary doesn't get the operation, he stands an 80 percent chance of dying within the first year. Even with the operation, the prognosis is not favorable; nearly a quarter of all babies born with spina bifida die immediately after birth as a result of their defects. Should he survive, Cary most likely will be unable to walk; should he be one of the few lucky children able to walk, he will require braces and crutches.

Though certainly the most immediate ones, these are not the only concerns. For instance, because of the damage to his nerves, Cary will be incontinent and thus have to empty his bladder with a catheter. Fiber and fiber supplements will make up most of his diet; suppositories and enemas will empty his bowels, at least at first. An orthopedic surgeon will need to correct his clubfeet; over the years, he might become especially susceptible to fractures, bruises, and other musculoskeletal problems.

And then there is the possibility of a learning disability. Although half of the children with spina bifida fall into the average intelligence range, the other half fall below that level. No one knows whether this arises from brain damage or from the lack of brain stimulation; in any event, the challenge for Cary's parents is to teach him how to become self-reliant rather than dependent on his parents the rest of his life.

Gaul chronicles not only Cary's progress from birth to the time he enters kindergarten but his own and his family's as well. We see Gaul's initial sorrow and bewilderment at the prospect of raising a disabled child give way to a steely determination to fight for the quality of his son's life. Cary's parents, in turn, learn how to care for a disabled child without smothering him. They learn to appreciate their able-bodied son and to include him in the care of his younger brother. (Gaul writes that, like any two brothers, they fight like cats and dogs, but whenever Greg, the older boy, feels Cary is being threatened, he's right there defending him.)

Moreover, they teach both their children how to look beyond the obvious superficialities to see the real person within. (Cary tells his dad that, if he had to die and be reincarnated as someone else, he would want to be a boy named Cary again.) And, finally, the parents learn how to maintain their own marital relations without sacrificing the good of both children.

Gaul exhibits his Pulitzer Prizewinning form by writing in clear, concise tones that forgo sentimentality. Nevertheless, Gaul is first and foremost just a regular dad who wants no sympathy, money, or mawkish "Miracle Telethons" (his phrase) for his son. (He believes that, though well-intentioned, such productions only exploit physically impaired individuals rather than their intended purpose.) Instead, he wishes others would treat his son and others like him as they would any other child, save for their obvious disabilities.

Editor's note: Except for in The Saturday Evening Post, using folate for prevention of neural tube defects wasn't given wide attention in the lay press. It still isn't being stressed by the media even though the FDA has now said that all women of childbearing age should be taking supplemental folate to prevent spina bifida.

About the time Cary was conceived, his father knew all about safety in the blood supply and wrote a landmark piece about the subject for the Philadelphia Inquirer. Who could have known that he should have been told about the need for

folate for his wife before their baby was planned?

Most parents who conceive a baby with spina bifida still don't know that folate before conception is the key to preventing most of these birth defects.
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Author:Gramling, Jack
Publication:Saturday Evening Post
Article Type:Book Review
Date:Sep 1, 1993
Words:1011
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