Everything in Their Power
Last fall at St. Charles Hospital in Port Jefferson, N.Y. a child was born who became known across America as Baby Jane Doe. As her parents maintained in anonymous interviews, she was afflicted not only with the crippling birth defect known as spina bifida but also with water on the brain and other serious medical problems. When doctors advised the couple that corrective surgery would merely prolong a life that would, at best, be painful and brief, they decided to forgo the operation. Their decision precipitated a fire storm of controversy over the issue of the right of parents to withhold treatment. The Justice Department attempted in vain to intervene in the case to determine whether the baby's civil rights had been violated. Rarely is the agony of the family of a birth-defective child laid out so plainly for a nation to witness. Few parents of handicapped children must face a decision as wrenching as life vs. death; most make only the ordinary choices of day-to-day living, accommodating as best they can to what cannot be changed. There is a bravery in their simple persistence, but one for which no medals are minted. Six weeks after the birth of Baby Jane Doe, who is now living at home with her parents, another spina bifida baby was born to Michael and Barbara Vollan in Chicago. This is the story of the first few months of Christopher's life.
Michael and Barbara Vollan wanted everything to be perfect. Instead of enlisting the services of an obstetrician for the birth of their second child, they enrolled in the nurse-midwife program at Illinois Masonic Medical Center a few blocks from their Chicago apartment. Barbara relished the warmth and flexibility the program provided. "The nurse midwives are so supportive," she said. "They answer questions, tell you everything they are doing." The couple also took refresher Lamaze classes, just to be prudent.
Last November 21, at 7:45 a.m. on a cold, sunny Monday morning, Barbara felt her first contractions. The Vollans drove to the hospital and moved into one of the comfortable birthing rooms, Barbara clutching a Beatrix Potter snowsuit she had purchased for the baby. She and Michael made themselves at home, reclining on the queen-size wicker bed. "It's nice," Barbara said happily. "You can do your own thing in here."
Michael, a successful commercial photographer, had asked his studio to send over one of his Nikon cameras. He snapped some pictures as Barbara, 34, padded around the room, managing her contractions with her Lamaze breathing. But after Christopher's birth at 1:37 p.m., snapshots seemed out of the question. For all the hopeful planning, Christopher Vollan was not born in the homey birthing room. When fetal excrement was discovered in Barbara's amniotic fluid—an indication of possible complications—she was whisked down the hall to the delivery room, where doctors and emergency equipment awaited. Barbara had chosen to deliver without anesthesia; now her every exertion was clouded by the foreboding that "something was wrong."
Christopher emerged from his mother's womb shrieking with vitality. He weighed a robust 7 pounds 13 ounces, but Michael noticed he had a clubfoot. That, the pediatrician explained, could easily be corrected by surgery. "You have a marvelous healthy baby," he reassured the Vollans before leaving the room.
Michael's relief was short-lived. Eager to cradle the son he had hoped for, he stepped forward and turned the child on his side. Then he gasped. There was a hole in Christopher's back, a flat oval opening just above the buttocks, two inches wide and three inches long. Through it he could see Christopher's spinal cord. "Oh my gosh!" a nurse exclaimed and dashed to summon the pediatrician. Michael was alarmed and incredulous. "My defense mechanism was set off," he recalls. "The pediatrician hadn't even turned the baby over. He should have caught that. I started doubting the care my kid is getting—and he was only three minutes old."
Hastily returning to the room, the doctor covered the opening in Christopher's back with a sterile dressing and told Michael the infant would need an operation. Angry and confused, Michael lost his temper. "You'd better get somebody down here who can tell me what's going on!" he snapped. Barbara then held Christopher for what seemed to her only an instant before he was rushed away to the neonatal intensive-care unit, where Michael found a neurosurgeon examining the baby surrounded by a cluster of medical personnel. He asked if Michael was the father, then told him bluntly, "Your son will never walk. He will be in a wheelchair, and his chances of survival are not great. He has spina bifida." Michael had never before heard those words. Whatever they meant, he was not going to accept them. He stormed out of the room, thinking, "Wrong! I just know it's wrong!"
In the recovery room, distraught as he was, he tried to explain Christopher's condition to Barbara. "Oh my God," she moaned. "What are we going to do?" Then she urged him: "Call Nicklas." Dr. James Nicklas was their 5-year-old daughter Courtney's pediatrician. Over the phone Nicklas calmed Michael and put him in touch with Dr. David G. McLone, head of the largest spina bifida clinic in the nation, at Children's Memorial Hospital a short distance away. Twenty minutes passed before McLone could return Michael's call. When he did, McLone told Michael he would immediately dispatch a team of three nurses and a doctor to bring Christopher to his neurosurgical unit at Children's Memorial. As Michael waited, he and Debra James, a close family friend, paced the halls, several times stopping to recite the Lord's Prayer together and comfort each other with a hug.
Accompanying the medical team, when it arrived, was coordinator Katy Dillon, who gave the Vollans their first hard information about their son's birth defect and what it would mean to them. More than 30 times a year Dillon finds herself in such situations, but rarely does she encounter a family as united as the Vollans and a new mother as alert as Barbara. By this time Michael and Barbara had been joined by Barbara's mother, Geri Naleway, who had driven in from Burlington, Wis., and Courtney, who sat on the bed hugging her parents.
"It isn't necessarily true that Christopher will never walk," Dillon told them, and to Barbara she added comfortingly, "As soon as you come to the hospital after Christopher's operation, you can hold your baby. There's a special way. The nurses will show you how." The family listened tearfully as Dillon explained that spina bifida is the most common of all disabling birth defects, a crippling malformation of the spine and spinal cord affecting one of every 1,000 newborns. At birth, she told them, the deformed spinal cord protrudes from an improperly formed, open vertebra, producing a raw opening, as in Christopher's case, or sometimes a bulging, translucent sac on the child's back.
These wrenching facts, and dozens more, the family would soon learn by heart. For the moment, however, the crucial thing was Dillon's word that an immediate operation to enclose the spine would help assure Christopher's survival and set him on the road—albeit an arduous one—to life as an intelligent, functioning human being.
Dillon drew diagrams and handed out literature as she talked. Knowing that she was about to separate the Vollans from their baby, however briefly, she snapped a Polaroid of Christopher before he was wheeled away. Courtney, wide-eyed through the lecture, took the photograph to kindergarten the next morning, earnestly informing her hushed classmates that "Christopher is going to have some problems walking, and he has an opening in his back." The picture shows the infant, an IV inserted in his head, grasping his father's finger.
Included in the literature Dillon provided was a photograph of a smiling little boy leaning on crutches, his tiny face framed by a Chicago Bears' football helmet. The picture hit Michael like a fist in the gut. A rabid football fan, he played the game in high school in Oak Park, III. and might have continued if his knees hadn't given out. Now he watches the Bears play on television and tapes most games on his VCR. He had often joked with Barbara about having a son to play football with, but to him it was no laughing matter. "Watching Courtney grow and play with dolls and want to learn all about cooking and sewing," he says plaintively, "made me sort of want to have someone who is interested in the things I like to do."
As the team of doctors and nurses put Christopher in the ambulance, the enormity of what had happened began to weigh in on Michael. "It was pretty devastating," he recalls, "to see that many people involved in my kid's care. We were getting hit with information in wave after wave. It was a lot to absorb."
A half-hour later, unable to bear the thought of remaining in the hospital surrounded by blissful mothers who could hold their gurgling newborns, Barbara pulled herself out of bed and dressed. Her mother helped her pack, and they went home together. "Barbara is really a very strong woman," says Debra James. "She takes control of a situation in just the right way."
She wasn't home long before the phone rang. "Barbara?" asked a friend, her voice betraying surprise and concern. "You're not supposed to be home this early." Barbara took a deep breath and for the first time began to explain what had happened. It wasn't easy. "People think you have had a child that is brain-damaged or spastic," she says. "So few know what spina bifida is. They don't know what to do. They just feel sad."
At Children's Hospital, meanwhile, Michael sat with his head in his hands as Dr. McLone laid out the salient facts of Christopher's problem. "I knew he wasn't going to get all of it," the doctor says, but Michael's questions indicated he wasn't totally unhinged by grief. The good news was that Christopher would probably grow up to be "ambulatory in the community"—that is, able to get around on his own, with the aid of canes or crutches. On the other hand, McLone explained that serious complications could arise in the short term—bladder and bowel malfunctions, fluid collecting in the brain—and discussed how they might be treated. "I'm not telling you this is going to be easy," McLone said. "Spina bifida is a lifelong disease. As a parent, I can tell you it is hard enough to raise a child who isn't handicapped. And this is going to be more difficult. But we have an awful lot of families who are doing it, and doing it nicely."
The day seemed to go on forever. When Michael got home at 8 p.m. and cried again with Barbara, Courtney, De-bra and Geri, the moment that morning when he and Barbara had left so hopefully for Masonic Medical Center seemed like a vision from the long-distant past. Left alone at last with their distress and exhaustion, the Vollans felt their defenses slipping away. "You kind of look at yourself and say, 'Why me?' " Barbara says. "Then there is the guilt. Did I do something wrong? Did I drink too much?" When Courtney was 2 years old, the Vollans had separated for a summer, then come back together. Now their tendency was to blame themselves for their problems. "I was really adamant about using the nurse-midwives," Barbara says, "and Michael would say, 'Don't you think you should be seen by a doctor?' But I was insistent, and that was stressful."
Soon afterward the Vollans learned enough about spina bifida to put these agonizing self-doubts behind them. Little is known about the genetic factor in spina bifida, except that it may interact in some unexplained way with environmental pollutants or other agents to cause the defect. Moreover, nothing could have been done to prevent the defect, since it occurs on about the 30th day of pregnancy—often before a woman is aware she is pregnant. Nor is detection possible until much later. Barbara was too young to have amniocentesis, which might have picked it up. But at that point the only recourse would have been abortion, which Barbara says she wouldn't have considered.
On Tuesday, the day after Christopher was born, Dr. McLone operated for two hours to close the opening in the infant's back. At his studio, Michael had a hair stylist, makeup artist and model waiting to shoot a shampoo ad. He had already postponed the session once, on Monday, and couldn't afford to do it again. "In the free-lance business," he says, "you work when the work is there. I figured if I didn't do it, I would never work again. So I had to be strong." Reassuring himself that Christopher was in good hands, he drove to the studio. "It was the hardest day of my life," he says. "As soon as I got there, people started showing up saying, 'Congratulations! You have a son!' It was kind of hard to say thanks." Reluctantly, since he'd planned to keep the news to himself, Michael broke down and confessed the truth, which made him feel better. Still, several times during the day he slipped away quietly to a back room to cry. After about 10 minutes, he would dry his eyes and go back to work.
Meanwhile, friends and relatives kept urging Barbara to slow down, to take care of herself, but she had a higher priority. On that Tuesday, she went to the hospital with her mother. Christopher was now out of the recovery room. Finding Dr. McLone, Barbara asked, "When can I start nursing?" Replied the surgeon: "Let's see if he takes glucose first. You can start as long as you hold Christopher properly and do not put pressure on the surgery." On Wednesday the nurses showed Barbara how to hold the baby, who now had a bandage taped over his lower spine. Handling him "real carefully at the bottom," Barbara lifted her son to her breast. As the boy began nursing eagerly, a smile filled her face. "I nursed Courtney for almost two years, and she was never sick," she said. "I think nursing is particularly good for Christopher. He needs strength more than anybody to help him get through this." Afterward, Barbara seemed more composed. "Bonding concerned me," she admitted. "Maybe it was selfish on my part—that I wanted my baby. I just wanted him to know he is mine." That night Michael sent Barbara a dozen roses. It was their ninth wedding anniversary.
All week friends and relatives called the Vollans with encouraging bits of information. Leonard Naleway, Barbara's father, emerged from his local library to report that an opening very low on the spine, like Christopher's, was encouraging, since nerve functions below the opening are usually lost. A friend called to say she knew of a 20-year-old woman with spina bifida who is able to walk without braces or crutches. These little morale-boosters helped. "Knowing other people can cope," says Barbara, "helps you figure you can too."
Yet not everyone knew how to respond. Instead of the usual baby toys and clothes, which Christopher would have enjoyed as much as any other child, the Vollans' apartment filled with flowers. Instead of going to the hospital to see Christopher, many people sent cards or telephoned. "All my friends say, 'Oh my God! The kid has a birth defect,' " Michael complained. "They don't want to deal with that."
In one respect, Michael himself was having a difficult time dealing with Christopher's condition. The dream of father and son heading out to the park and tossing the football around was painfully hard to relinquish. "Michael wants it his way, much more than I do," said Barbara, but her own modest dream was threatened as well. "I don't want Christopher to be an outcast, to be ridiculed," she admitted. "I want him to be like everyone else. Why can't he be that way?" She brooded for a moment, then added, "You feel so bad for him, and yet every day it gets a little better."
In the first week of Christopher's life, the Vollans learned to exercise his legs to prevent the muscles from atrophying. Four times a day at the hospital they lovingly massaged his calves and heels and slowly bent and unbent his legs. "He is going to walk," Michael told a visitor. "He is. His right leg feels strong. Aww, Christopher, you are going to walk." Suddenly, feeling an unmistakable tug, Michael announced with a grin, "When Christopher pulls his leg back, boy, that is better than the Super Bowl."
On the second Tuesday of his life, Christopher was examined by Dr. Luciano Dias, an orthopedic surgeon, as Michael and Barbara hovered nearby. "Christopher will be walking, indoors and outdoors," Dias told them afterward. "But he will need some support—short crutches and light, plastic, below-the-knee braces. His clubfoot will be operated on when he is 8 months old. That operation has an 80 percent success rate." The doctor paused to gauge the effect of his words. "We should look at the positive side with these kids," he said. "Everyone looks at the negative side. They always look at the muscles that are paralyzed. They should look at the muscles that are working. We cannot make that kid normal, but we can make him very close to normal."
Dias' optimism was wasted on Michael. "I was really hoping Christopher wouldn't need crutches," he said dejectedly. "I was really praying for that because it would make it a lot easier for him to have a normal life, to play with other children. I don't want him to be the kid at the end of the block who isn't walking."
Though the initial crisis of Christopher's life had passed, he was by no means out of danger. Each day his parents, anxiously, and the hospital staff, clinically, watched him closely for signs of the most common complication of spina bifida—hydrocephalus, or water on the brain. In a normal child, cerebrospinal fluid is produced deep in the brain and moves outward through the brain's cavity-like ventricles to bathe and cushion the surface of the organ and coat the spinal cord. It circulates, then is absorbed at the top of the brain. In about 80 percent of children with spina bifida, however, a physical deformation of the brain—not in itself intelligence-threatening—acts like a dam, causing fluid to back up in the ventricles. As the ventricles swell, the pressure can permanently damage the brain and even cause death.
By implanting a thin plastic tube in the ventricles and threading it under the skin to the abdomen—where the fluid is harmlessly reabsorbed—surgeons can control hydrocephalus and prevent brain damage. But shunts, as they are called, are imperfect devices. As babies grow, for instance, they need progressively larger shunts. Three surgical revisions before the age of 10 are not unusual. Michael and Barbara noted with consternation that the neurological unit of Children's Hospital seemed full of spina bifida children needing surgery to correct a daunting array of shunt problems. "We're praying against the odds that Christopher won't need a shunt," Michael said. "Barbara and I are the only ones in the whole hospital who think it won't happen." The corners of his mouth gave a telltale twitch. "It probably will," he said sadly.
At regular intervals during that first week, Barbara measured the circumference of Christopher's skull, searching for signs of enlargement. Christopher's head was getting bigger. But was it normal growth or a symptom of hydrocephalus? "Let's wait and see," counseled the nurses on the floor.
The signs became in disputable after only eight days. On the same Tuesday that Dias told Michael his son would need crutches, the Vollans learned that a shunt was inevitable. The next day Christopher was fitted with Velcro-trimmed leg braces—white, knee-high, plastic devices designed to help straighten his clubfoot. "He looks like a bionic baby," laughed Barbara. Wednesday was also Michael's 38th birthday. At his studio that night, the family popped champagne corks and divided a birthday cake, then went to McDonald's for dinner. "It wasn't a normal birthday party," said Barbara, "but I think we needed it."
After dinner Barbara went to the hospital and cradled Christopher in her arms all through the night. In the morning he was rolled off to surgery. The Vollans waited in the lounge. Waited and thumbed through magazines. Waited and stared at the TV set. Finally a scrub-suited neurosurgeon appeared in the doorway and called their name. The operation had gone well, he said. Relieved, the Vollans fairly stumbled out of the room and headed for the cafeteria. Halfway down the corridor they suddenly stopped and embraced, tears welling in their eyes. "What I need today," Michael said with a wet grin, "is a business lunch with three martinis."
The Vollans spent much of the next day gazing at Christopher in the hospital's constant-care facility. Three stuffed animals attended him in his crib as he slept soundly, oblivious to the blips and beeps of his heart monitor and IV pump. Each day the mattress of his crib would be elevated by an increment of 15 degrees until he was accustomed to being held vertically. As he lay sleeping, the nurses inspected the soft fontanel at the top of Christopher's skull for signs of renewed hydrocephalus. "You can't predict," said nurse Deanne Petramale, "when, or if, a shunt will malfunction."
Two weeks after Christopher's birth, friends took Courtney to see a production of Dickens' A Christmas Carol. She brought home a copy of the book as a souvenir. Leafing through it with her father, she stopped at an illustration of Tiny Tim leaning on a crutch. "Poor Tiny Tim," she sighed. Michael decided to seize the opportunity to prepare Courtney for the future. "Your little brother is going to have crutches like that," he said cautiously. Courtney was silent a moment. Then almost inaudibly her mouth formed the word "Oh," and she wrapped her arms around her father in a burrowing hug.
That same week, Barbara heard unfamiliar voices outside Christopher's room. Looking out, she saw Dr. McLone with a solemn group of men in dark suits. "Who are those people?" Barbara asked a nurse. She was told they were a fact-finding delegation of legislators trying to determine optimum care standards for children with spina bifida and other debilitating birth defects in a specialized hospital. Thirty years ago spina bifida infants were usually sent home with no treatment at all. Few survived even a year, and most of those who did went on to suffer the crippling aftereffects of hydrocephalus and other complications. Advances in surgery, antibiotics and other techniques ushered in a new era of aggressive spina bifida treatment during the 1960s. But the pathetic Baby Jane Doe case was refocusing national attention on parents' rights even as the Vollans were standing vigil over Christopher.
For Dr. McLone, a pioneer in the aggressive treatment of spina bifida who founded the multidisciplinary treatment team at Children's Hospital, the New York case was deeply disturbing. "I don't have any argument with surgeons who don't operate on the two or three percent of their patients who they feel will not be able to live independently," he says. "But I have no doubt this family was given misinformation on spina bifida."
As for the Vollans, they never doubted that unstinting treatment was the only way to proceed. Though their situation never seemed as bleak as that of the parents in the Baby Doe case, their prospects were daunting enough. When the Vollans finally brought their son home early in December, 16 days after his birth, Christopher's medical bills totaled $25,000. Medical insurance covered most of that, but the cost of care to adulthood, including hospital bills, surgery, doctors' fees and equipment, averages more than $200,000.
For the parents of a spina bifida baby, changing diapers is the least of each day's messy devotional chores. Among the nerves most commonly incapacitated by the birth defect are those governing bladder and bowels. To prevent urine from backing up in Christopher's urinary tract and infecting his kidneys, the Vollans had to learn to catheterize the boy six times a day. Inserting the catheter doesn't cause Christopher pain, since he has little sensation below his hips. But it was a procedure Michael at first found almost unbearable to watch, let alone perform. Yet some day, he knew, Christopher would have to do it for himself, so he slowly overcame his own squeamishness. "Michael is doing real well," says Barbara. "He has always been the macho Greek, but you have to learn real fast that there are other things more important in life."
As the weeks lengthened into months, the Vollans gained confidence in meeting each crisis. Still, they were never free of the threat of calamity. One night, for instance, Christopher vomited. Was it simple indigestion? Or a potentially dangerous shunt malfunction? Checking Christopher's skull, the Vollans decided it was nothing serious, but only after some moments of apprehension. January and February brought more false alarms, one requiring an ultrasound, which revealed that the shunt was still working. Christopher endured these trials gracefully. An even tempered, outgoing baby, he ate well and slept peacefully through most of each night.
Then one Sunday in March, Christopher began crying and couldn't be comforted. Michael, who was watching a college basketball game on TV, paced endlessly up and down, patting and soothing to no avail. Christopher wouldn't take a supplementary bottle, his fontanel seemed fuller and his back felt "bulgy" and hard. This time the alarm was real. Next morning Michael carried a sedated Christopher down the hospital corridor to the operating room. It turned out that a tiny blood clot had blocked the shunt—nothing that was likely to become a chronic problem, McLone assured the Vollans. But as the couple brought their baby home after one more hospital stay, they realized more clearly than ever that life had become, irreversibly, a matter of unflagging vigilance, with no guarantees.
For that they now felt prepared, even grateful. "I think we are blessed with Christopher," Michael said, "because he has added discipline to our lives." Barbara was equally sanguine. "Some of my friends who are 35 or 36 are finding out they are not going to be able to have children," she said, "and they are real sad about it. Christopher isn't perfect, but at least he is mine." As they spoke, Christopher smiled, and lolled in his crib, his little arms flailing happily at his toys. The next round of struggle—and acceptance—would be his.
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