On a sweltering Wednesday last July, Janet and Curt Rife took their seats in a dank waiting room at University Hospital in Baltimore to talk with medical specialists about the progress of their 20-year-old son, Brian.
It had been 17 days since Brian's car wreck. He was still in a partial coma, his life sustained by a web of plastic tubes attached to machines next to his bed in Room 23 of the hospital's shock-trauma center. His condition fluctuated wildly from day to day -- and so did his parents' emotions. No one knew whether Brian would live, much less what kind of life he might face if he did fully awaken.
But the news this day, July 31, seemed unusually promising.
"Brian's progress is nothing short of remarkable," said Brad Swanson, 27, a sandy-haired speech pathologist. "When I first started working with him we were trying to get him to do very simple things, like open his eyes. Now we're at the point where he's actually recognizing a letter or word. I think that's quite spectacular. I'm truly amazed."
"I agree," Janet replied softly, her voice sounding taut and unsure on a tape recording Curt made of the meeting. "It's just hard to get a handle on it, emotionally."
"His recovery is going to be a roller coaster," Swanson said. "It's hard for you to appreciate that because every time he takes a back step you take one as well."
A few minutes later, as if on cue, in strode Dr. Jonathan Greenberg, the neurosurgeon in charge of Brian's case. His first words caught the Rifes by surprise. "There are still a couple of major problems," he said, as the room fell silent.
The problem: Several tears in Brian's brain tissues had not healed. The solution: An operation, as soon as possible.
One step forward, one step back. From the first day the Rifes walked through the doors of shock-trauma -- the day Brian fell asleep while driving to Ocean City, Md., and ended up as patient number 18,874 at the 13-year-old center -- they never knew what to expect. Amid all the uncertainty, they quickly learned one unchanging truth: In the world of shock-trauma, promise and pain could be meted out in equal measure, sometimes simultaneously.
The uncertainty hung over the Rifes for the rest of the summer, forcing them to plan for a range of possibilities -- a miracle, a death, a prolonged coma. Sometimes, the uncertainty made the planning seem absurd: One minute, doctors would talk pessimistically about whether Brian would ever reach full consciousness; the next, social workers methodically discussed how Brian could apply for a job-retraining program.
As the summer wore on and Brian clung tenuously to life, the Rifes attempted to lead normal lives, both at work -- Janet, 45, had a part-time job as a legal secretary in Washington, and Curt, 50, was a computer systems expert at the Pentagon -- and at home in Springfield.
This was part of the plan, too. The social workers had told them: Don't let Brian's injury totally disrupt your lives. Don't get so wrapped up with Brian that you neglect your other four children.
Janet tried hard to remember that. One night in early August, she came home after a long day at the hospital, where doctors were preparing once again to operate on Brian's brain. Danny, 9, her youngest son, had a request: He wanted to rent a wrestling movie and watch it on the Rifes' videocassette recorder.
It was the last thing Janet wanted to do. But she did not tell Danny that. Instead, she got back in the car and took him to the movie rental store, remembering what another parent with a comatose son had warned:
"Some siblings say, 'Not only did I lose a brother, I lost my parents as well.' " 'Brian, Wiggle Your Toe'
From the moment Brian Rife arrived at the shock-trauma center at 11:30 a.m. on July 14, he did almost nothing on his own. Machines breathed for him, brought him food, carried away waste. His coma was so deep that there was no evidence of life. His eyes were closed, his arms and legs were stiff, his hands clenched into tight fists.
Inside his skull, however, there was too much activity. His brain tissues had torn in several places, allowing the fluid that cushions the brain to leak out. But the fluid had nowhere to go. Some of it leaked out through his nose and ears. Most of it remained inside his skull or filtered down into his neck, causing it to swell. There was so much pressure inside Brian's head that the doctors decided it was too risky to operate.
"They told us if they tried to do anything [his head] would literally pop," Janet recalled.
Doctors could do little about the tears in Brian's brain tissues until the pressure subsided. But Brad Swanson did not have to wait. All he needed was some sign that Brian's brain was still working, that it could still control physical activity.
That sign came four days after the accident. Janet's parents had gone to the hospital, and her father put his hand in Brian's hand and told Brian to squeeze it. Brian did -- or appeared to -- but Janet reminded everyone what the nurse had said: "It's just a reflex."
The next day, however, he did it again. Just to make sure it wasn't a reflex, one of the nurses grabbed him by the legs and said, "Brian, wiggle your toe."
The toe began to move. "We stood there," Janet recalled, "and watched . . . . There was life. It was as though the energy force was back in him . . . . "
During the next few weeks, Brad Swanson spent several hours a day with Brian, trying to stimulate Brian's physical responses. He rang bells. He played tapes of Brian's favorite rock music. He rubbed a lemon-flavored Popsicle over Brian's lips. He showed Brian photographs of his family -- not just Janet and Curt, but his sister Sheri, 18, and his brothers, Scott, 22, Eric, 13, Danny, 9.
Slowly, day by day, Brian began to respond, although his responses were sporadic. Janet and Curt had always thought that patients emerge from comas abruptly -- or not at all. That was the accepted definition until about 10 years ago, when researchers in California and Europe began to show that there were different degrees of coma and consciousness. Now, medical experts agree that some comatose patients can hear, react and even talk -- yet not be entirely conscious.
As the weeks went by, Janet and Curt both tried to find ways to sort through the whirlpool of emotions that roiled within them. Curt felt trapped by the crisis and the medical terms the doctors used -- dura mater, cerebral edema, cribriform plate. His reaction was to turn to a machine. He began tape-recording the family's meetings with the shock-trauma staff, hoping it would help him understand exactly what the doctors were saying.
Janet's reaction was to turn to her diary, a tan-colored, loose-leaf notebook that she started soon after the accident. It became a living record of her private thoughts about Brian's fight for survival:
July 26: We get to the room and Brian is in the chair. Brad is with him, using the Popsicle again . . . . I'm aware of Brad's voice sounding like Mr. Rogers. "Do you want to hold the Popsicle now?" "Put it to your mouth, come on, Brian."
I ask to be alone with him for a while and when I am alone I am blank. I rub his arms, his chest, his legs and wipe his face with a moist cotton pad.
The muscles of my belly contract at the sight of him, cerebral spinal [fluid] pouring from his nose, his body limp and lifeless.
As Brian started to respond to Swanson's methods, Janet wrote:
August 5: A day of rosy, warm images. His right eye looks at me with real expression. It seems to twinkle. I say, 'Hi, Brian,' and really mean it. Our hunger for all those parts of his spirit and personality are consuming . . . .
Brad gets out paper, clipboard and pencil, asks Brian to make a one and a two. He does a credible job. Another chorus of approval.
He was asked what month is it? October: shakes no. May: no . . . . August: nods yes . . . . What is the year? He shows 1-9-8-5 with his finger. "Alright!" intone the cheerleaders.
. . . [I] go to the chapel and say a heartfelt prayer of thanks.
Swanson and his colleagues used words such as "unbelievable" and "miraculous" to describe what they were seeing. At the same time, however, fluid continued to leak from Brian's nose -- a dramatic reminder that the tears in his brain were not healing and that the chances of infection were growing.
One step forward, one step back. Greenberg, the neurosurgeon, decided that he could wait no longer. He had to repair the tears. He met with Janet and Curt and told them: "I'm going to take half his head off and [try] to fix things up. I don't know what kind of effect that's going to have. Clearly, there is a major unknown here." 'How Do You Patch It?'
Greenberg's basement office at the shock-trauma center is a small, cluttered room dominated by stacks of books and files. The walls are decorated with notes and letters from the families of former patients.
Greenberg, 35, is a stout, silver-haired man with keen dark eyes and rectangular wire-rimmed glasses. He speaks with care and precision, as one might expect from someone with doctoral degrees in law and medicine from Columbia University in New York.
During his conferences with the Rifes, he invariably conveyed both the best and worst possible scenarios in Brian's case, a practice Janet and Curt had come to expect. "No matter how good the news was, a 'but' always lurked in there somewhere," Janet said.
But as he explained the operation to repair Brian's torn brain tissues, his words had a sharp and chilling edge. He needed to perform a craniotomy, he said, an extremely dangerous procedure that required cutting open Brian's skull so that Greenberg could reach the torn brain tissues.
His voice sounds grave and ominous on the tape recording Curt made of Greenberg's explanation:
"We will be working directly underneath the brain over a wide area. There is an increased risk of losing the brain. Even have him bleed to death . . . . It's a considerable risk. We'll be working near major blood vessels, near major nerves, near the brain stem.
"It's a major operation but absolutely necessary," he said.
Later that night, back home in Springfield, Janet and Curt listened to the tape over and over, trying to comprehend the magnitude of the danger that lay ahead. In anguish Janet called the family's priest, the Rev. Curtis Clark. The next day in Baltimore, his mouth covered by a mask and a green surgical gown over his mass robes, Father Clark solemnly administered the last rites, absolving Brian of sin as his parents prayed.
Early on the morning of Aug. 7, Brian underwent surgery in a first-floor operating room. The craniotomy lasted eight hours and was the most extensive that Greenberg had performed.
The procedure is something of a specialty at the shock-trauma center, where Greenberg and his colleagues perform about 150 craniotomies of varying difficulty each summer, primarily on victims of car and motorcycle accidents.
In Brian's case, Greenberg removed the entire front half of Brian's skull and about two-thirds of the bone on the left side, exposing half of his brain. Then, using microsurgical instruments, he gently probed beneath the tissues. He had no trouble finding the leaks.
"We had a fairly good view of most of the base of his skull," he told the Rifes after the operation. "We found the area we think caused the leaking and we were able . . . to put a patch on it."
"How do you patch it?" Janet asked, her voice quavering.
"We get some material from the undersurface of the scalp, just over the bone. [We] put it over the covering of the brain and sew it right on," Greenberg said.
He then told them the most important news of all.
"I'm very satisfied," he said. "I know we looked everywhere we could . . . . I don't think he should have any problem with this in the future."
During the next two weeks, as Brian recovered from the operation, he seemed to get stronger. One day, with therapists supporting him on each side, Brian was walked up and down the hallway to stimulate his leg muscles.
Greenberg was pleased enough to speculate that Brian might recover enough to participate in some athletic activities. He told Janet and Curt: "Obviously, no contact sports or roughhousing for at least a year or two until the skull fuses again. The bone has to knit together . . . . [But] swimming, walking, jogging -- all that is okay."
At the same time, Swanson and Bernice Wolfson, a social worker at the hospital, cautioned that it was impossible to predict how much the accident had impaired Brian's mental abilities. Unlike stroke damage, which is usually limited to one portion of the brain, the violent nature of most head injuries can cause widespread damage.
"He may have problems with his eating, his vision, his mobility," Wolfson said. "He may have some communicative and thinking problems, some personality and intelligence changes."
Swanson put it this way: "Brian is going to look very normal from the outside in another week, once his hair grows back and his scars heal. But . . . we can't see the black and blue marks inside his head." 'Okay, There's More Leakage'
Brian showed enough improvement after the operation for the Rifes to consider the next step in his recovery. He could not stay at shock-trauma forever. The Rifes wanted him sent to a special rehabilitation hospital for head-trauma victims.
There are not many, and they cannot handle the caseload created by dramatic advances in medical technology. Each year, more than 50,000 people suffer head injuries that are severe enough to cause lasting physical, intellectual and psychological problems; there are only 300 such hospitals nationwide with a combined capacity of 1,200 beds strictly reserved for head trauma.
The Rifes had a choice of two in the Washington area. On Aug. 16, nine days after Brian's operation, they visited Mount Vernon Hospital in Virginia, which has a 40-bed rehabilitation unit. They hoped that their medical plan would cover the cost of Brian's rehabilitation therapy; they belonged to the Kaiser Permanente health maintenance organization, one of the options available to Curt as a federal employe. Brian was covered because he was a college student who lived with his parents during the summer.
But as they dug deeper into the subject, they discovered that Kaiser's coverage, like many other American health plans, specifically excluded "the services of a rehabilitation facility."
When they first learned this, Janet and Curt did not quite believe it. But Wolfson, the social worker at the shock-trauma center, was not surprised. For six years, she had been counseling grief-stricken families about the world of medical insurance.
"What the family often does in this situation is minimize the importance of insurance," she said. "Their primary reaction is always, 'We're not worried about the money. We're worried about him getting better.' "
On Tuesday, Aug. 20, the Rifes' search for a rehabilitation program came to an abrupt halt. That day, while examining routine test data, Greenberg found another fluid leak in the lining of Brian's brain. Once more it was necessary to operate.
Greenberg told them: "We know exactly where he is leaking the spinal fluid, and it is from the one spot we could not get with the operation we did . . . . It sits directly in front of the brain stem. There is . . . no way you can get to that area safely to do the patching inside the head. But we can patch it from the outside by going through the sinuses.
"There is a risk of bleeding, of breaking through," Greenberg said, his voice a subdued monotone on the tape recording Curt made. "But . . . the risk . . . in doing this operation is an awful lot less than in not doing it . . . . Sooner or later he will get an infection from this [leak]."
On the ride home that sweltering Tuesday afternoon, Curt decided to leave the tape recorder running. Amid the drone of the engine and the rumble of traffic, he and Janet tell 9-year-old Danny and 18-year-old Sheri about the latest setback. They try to hide their dejection, but their voices sound tense and fearful.
Danny: What happened?
[Several seconds go by. Sounds of horns honking.]
Janet: Okay, there's more leakage. But it's way back, it's in the middle of his head, Okay? In order to get to it, they're going to go through his nose . . . . There's all these cavities in the head right here behind the nose and mouth and they know just how to get in there and do what they have to do.
Danny: And then we'll be over operations?
Janet: [Softly] Well, I certainly hope so.
Sheri: Will this one set him back like the other one?
Janet: Not as much. A couple of days probably, because he'll have general anesthesia again.
Danny: Wha's ana . . . anasesa?
Janet: Oh, that means they put him to sleep.
Sheri: Knock him out.
Curt: Knock him out without hitting him.
[Several moments of silence.]
Sheri: Do they know where it is?
Curt: Yeah, they know exactly where it is.
Janet: I think I can probably show you in some of the pictures we have of the brain at home. But it's right about at the center of his head, at the top of the brain stem . . . .
Curt: They said that's the only spot they couldn't get to through the kind of surgery they did . . . .
Sheri: Is it hard to get to?
Janet: Everything they do is difficult, I guess.
Sheri: I mean, is it more difficult than the other one?
Janet: No, I don't think so . . . .
Curt: It's still dangerous. There's always the possibility. In any surgery there's always the possibility of something going wrong.
Danny: Ana . . . ana . . . an na see see olla jist.
Curt: That's right. Anesthesiologist.
Danny: What about Putt-Putt?
Janet: Oh, Putt-Putt golf. [Pause.] What about Putt-Putt golf? Any chance we can play that after we eat tonight? We might need a little recreation. 'Walking a Tightrope'
On the morning of Aug. 23, just before the second operation was to begin, Brian's temperature shot up. Tests revealed a severe bacterial infection of the membranes surrounding his brain. It was diagnosed as meningitis, the setback Greenberg feared most.
Immediately, Brian was put back on life-support equipment. For three weeks powerful antibiotics were pumped into his body to kill the infection. It worked. By mid-September, the infection seemed to be gone.
Meanwhile, Greenberg discovered, the last cerebral membrane tear had healed on its own.
Brian had eluded death once more -- but at some cost. He was once again in a deep coma, unable to respond to stimulation of any kind. No one was sure how much brain damage the infection had wrought. And no one could say whether he would awaken again.
On Tuesday, Sept. 24, Janet and Curt met one last time with the shock-trauma specialists. The time had come to transfer Brian to a hospital closer to home. After 73 days and $121,677, Brian was out of danger -- for this the shock-trauma center could chalk up another triumph -- but what kind of life had been saved?
Janet wasn't sure. That night, she wrote in her diary:
Final meeting. I was "holding up very well," they said. Once again the BAD NEWS was delivered: "There is irreversible damage to the brain stem." "He is likely to be always a dependent person."
But at the end the qualifier, "Sometimes these patients surprise us."
[I am] walking a tightrope between reality and positive thinking. Having thanked [the staff] for [their] help, am I sincere or merely coping in a socially acceptable way? It would, afterall, be quite outrageous to scream, "perhaps you should have let him die!"
At 12:30 p.m. the next day, an ambulance carrying Brian Rife left the shock-trauma center and headed for Fairfax Hospital, Brian's new home. Janet rode with him.
It was a warm and gusty afternoon, the third day of autumn, one day after Brian was due to return to college.
NEXT: The cost of survival