Audio By Carbonatix
On June 1, Alex Edwards became the least popular victim in Arizona. That was the day Alex, a frail, five-year-old boy, won the nation’s largest damage award in an AIDS-related lawsuit.
Arizona, at the time, was awash in sympathy for victims. Indeed, the state was on the verge of amending its constitution to enshrine a victims’ “bill of rights.”
But when a Phoenix jury awarded $28.7 million to Alex, an AIDS victim who contracted the virus from a blood transfusion shortly after his birth in 1985, the public greeted the decision not with cheers, but outrage. His parents, ordinary people who had struggled heroically to care for their son, suddenly looked like a pair of con artists who’d ripped off the system.
Newspapers voiced compassion for defendant Abraham Kuruvilla, the doctor who had ordered the transfusion. Alex is a victim of fate, they said, while Kuruvilla was betrayed by a legal system that punishes a good and decent man when, despite his best efforts, things go wrong. Media commentators and leading physicians leveled savage criticism at the jury and judge, questioning both their objectivity and competence.
The amount of damages was so ruinous, and the facts–as most people understand them–so clearly a constellation of bad luck rather than negligence, Kuruvilla supplanted Alex as the primary victim in the popular imagination. Even after the huge jury award was set aside in favor of a settlement, sympathy for the defendant continued to cascade from medical colleagues, patients’ families and the public.
A widely respected Phoenix neonatologist, Kuruvilla says he intends to leave the practice of medicine; the jury’s verdict, quite simply, has broken his heart. Convinced his case illustrates fatal flaws in the way our society compensates injuries, Kuruvilla readily grants interviews to discuss the litigation.
While the reactions of the doctor and his lawyers have been widely quoted since the trial, the same is not true for Patricia and Roy Edwards, who brought suit on behalf of their son. Except for their sworn testimony, only fragments of which were reported outside the MD120 Col 1, Depth P54.04 I9.06 courtroom, the Edwardses remained silent during the trial at the behest of their attorneys.
For all this community’s supposed interest in victims, once the Edwardses were free to talk, no one sought them out. No one asked what difference the verdict made to Alex or why the Edwardses pressed forward so relentlessly with a lawsuit against the man who once had tried to save their son’s life.
ALEX’S DAY DOES NOT BEGIN until his sister Sheila, fifteen, and brother Cody, eight, have departed for school over the sandy trails leading from their home east of Apache Junction. Until then, Alex remains snuggled, usually next to his mother, in a warm bed.
Once the older children have been seen off, Alex’s parents turn their attention to him because he requires their full attention whenever he is awake. One or both of them will stay with him constantly until he drops off to sleep in his wheelchair. Each morning, Pat or Roy lifts him out of bed, taking care to support his head, and places him in a wheelchair sized to fit his tiny frame. Alex turned five in March, but he is about the size of a two-year-old, the age he was when the AIDS virus made its first big push to take control of his body.
Until then he had been an active, precocious baby, learning to walk at nine months and talking in short sentences well before he was two. But the AIDS virus attacked–or allowed another, unknown virus to attack–the portion of his brain that controls growth. Within a few months, his busy little hands and feet slowed down, grew still and then began curling inward like leaves shriveling in the autumn chill. Little by little, the virus robbed him of speech.
His parents had no idea why this blight had struck their son, nor did the specialists they sought out as they made their way through a long line of medical referrals. Dr. Mark Rudinsky, an infectious-disease specialist at Phoenix Children’s Hospital, finally made the diagnosis in February 1987 when, after a series of fruitless tests, he ordered the toddler’s blood tested for AIDS.
Many more months elapsed before the Edwardses traced the source of Alex’s exposure. Pat still blushes at the series of humiliating questions she and Roy were asked about drug use and their sexual habits. Roy’s hair, which he has worn long all his life, triggered Col 3, Depth P54.02 I9.03 where the most advanced treatment would be close at hand should his condition worsen.
Once at Phoenix Children’s Hospital, Alex quickly improved and he was soon ready to go home. His relieved parents were unaware that the neonatologist on duty, Kuruvilla, had ordered a second transfusion for Alex, this time using “reconstituted” blood containing both red blood cells and plasma from separate donors. The plasma contained the AIDS virus, but had not been tested because the AIDS test was not yet available in Phoenix.
No one ever consulted the Edwardses about the second transfusion. Indeed, the only written record of it in Alex’s medical file was a hastily scribbled parenthetical reference later found in a nurse’s notes. The blood-bank records subsequently used to trace the blood’s recipients were not shown to the Edwardses until long after Alex developed AIDS.
The transfusion, which seemed so routine to the doctor he forgot to note it in his records, changed the family’s life forever. Following the AIDS diagnosis, the Edwardses sought advice for themselves and Alex, and were told by one medico to “just let Alex go.”
But the couple’s instincts told them otherwise. The family into which Alex Edwards was born enjoys few of the advantages considered necessary to flourish in these times. Still, the Edwardses are survivors. “Our attitude is, `This is the cards we were dealt, we’ve got to play ’em through,'” Roy says.
Pat was only sixteen when she and Roy, then 21, married. Neither had finished high school and their first child, Sheila, was born within the year. Many, perhaps most, early marriages would be destroyed by such odds, but the Edwardses stayed together and built a stable life.
“Both Pat and I believe you stick with whatever you start,” Roy says. Underpinning their commitment is an ability to sense each other’s emotional needs. “We’re pretty good at recognizing when the other one needs a break. We cover for each other pretty well.”
When Pat became pregnant with Alex, Roy had labored steadily for twelve years as a spray painter at a Ford dealership in Mesa. The couple lived in a small tract home and were active in their children’s school. Roy participated in Little League with Sheila, Pop Warner football with Cody and rode mountain Col 2, Depth P54.02 I9.03 medical insurance, long after Roy could no longer work productively. “My boss was great, he carried us for as long as he could, but there was no end in sight, so finally he let me go,” Roy says.
Once out of a job, Roy took over Alex’s care from Pat and set about “learning how to live the welfare life,” he says. Roy grew up believing himself to be adaptable and self-reliant. Those qualities sustained him through the dreary, degrading work of patching together a safety net for Alex out of what health care and social services were available.
Interspersed with the endless frustration, however, there were some blessings. There were bureaucrats who stepped out from behind their mountainous rules to run interference for the family, took heat from above and even managed to enlist their superiors in the Edwardses’ cause. Medical specialists who normally command top dollar devoted hours to Alex’s care, and never sent a bill, Roy says.
Pat got a part-time job cleaning motel rooms to help make ends meet. Roy supported her decision, believing it would help her emotionally, but he still winces at the memory of watching her bring home the bacon while he stayed with Alex. Nor could she rise above the most menial work, lest the family fall into the “notch group,” working poor who make too much money to qualify for state services but too little to survive on their own.
The most frustrating obstacle facing the couple, however, was not their own despair, but rather the despair of others. “It was a constant struggle to persuade people not to give up on Alex,” Roy says. “AIDS is fatal if certain things happen, but if you can keep those things from happening, a person can live ’til they’re ninety. The AHCCCS people, especially, kept treating him as a terminally ill person and we had to keep fighting to get anything approved because they were convinced it was futile.”
For Alex, each day is full of promise. His parents are in the business of helping him live, not waiting for him to die. They say their biggest challenge is providing him with enough variety to keep him from getting bored.
“We found that doom and gloom breeds doom and gloom,” Roy says. “I spoke with Ryan White’s mother one night on the phone, and she agreed the most important thing is to stay positive.”
THE JURY VERDICT and eventual court Col 1, Depth P54.02 I9.03 wheelchair, which was provided by the state health-care plan AHCCCS. That chair was poorly made and not equipped with a tray to give him a playing surface. “By the time we were approved for the chair, Alex had lost almost all use of his hands, and I think that might not have happened if he’d been where he could have things to keep his hands busy right there in front of him,” says Pat Edwards.
Now Alex spends time each day pushing small toys back and forth on a large plastic tray that attaches to his wheelchair. His favorite toys–miniature motorcycles, monster trucks and the like–embody strength, speed and mobility, qualities that most little boys acquire naturally as they grow to manhood. Following his bath, Alex is dressed in a brightly colored knit warm-up suit and matching Mickey Mouse socks. Mickey Mouse is his favorite character, and everytime he has an appointment with the AIDS specialist in Los Angeles, Alex goes to visit Mickey at Disneyland afterward. Alex is a deal maker par excellence, says his father. “His thing is, he does something for you, you do something for him,” Roy Edwards says. “He’ll be patient for hours in the doctor’s office while they run all kinds of tests on him, but you have to come through on your end of the bargain or he’ll hold it against you for days.”
During the trial, one newspaper said Alex “is described as having the mental development of a two-year-old.” Like much of the reporting of this case, that is not quite true.
“Alex’s ability to express himself is about like that of a nine- to thirteen- month-old, because of the neurological damage,” Roy says. “But in awareness, and effort to express himself, the doctor feels he’s the level of a seven- or eight-year-old.”
Alex’s large brown eyes, his mother’s eyes, express a startling array of reactions to the conversation around him. His parents constantly glance at him as they talk, as though acknowledging comments only they can hear. “You’ll notice we keep looking over at him,” Roy says. “It’s not that we’re not interested in you. We do that to stay in touch with him.”
Alex’s ability to communicate directly is confined to hand gestures denoting the need to eat, drink, sleep and have his diaper changed. The range of movement in these signals is so subtle a stranger could easily miss them entirely, and one of the Edwardses’ recurrent
Roy Edwards estimates that it costs $50,000 a year just to maintain Alex when he is healthy. That amount covers not only the AZT and other preventive medical treatments he receives, but also therapy, supplies and transportation to his endless appointments with doctors and therapists. Any illness, even the kind all children get, is likely to require hospitalization for Alex, as when he recently contracted chicken pox. Then the medical costs soar rapidly, his father says.
Aside from the new house, the only difference in the Edwardses’ lifestyle is the lessening of strain. The money has not changed them because their values have not changed. Not long ago, for instance, Pat and Roy decided to take a second honeymoon. “Pat and I count six hours that we’ve had together, alone, in the past five years,” Roy says.
The couple planned a trip to San Diego. They arranged for grandma to stay with the kids and packed up the van, only to be overwhelmed by a sense of urgency about their youngest child.
“At the last minute, we couldn’t leave Alex,” Pat says. “We were talking about all the things we planned to do, and we started to think about how much Alex would enjoy them. We didn’t know if there’d be a second chance for him to see them; we want him to experience all of life that he can.”
AFTER THE FIRST HALF of the trial ended in a verdict holding Abraham Kuruvilla responsible for the transfusion that exposed Alex to AIDS, the doctor walked across the aisle to Pat and Roy Edwards to tell them how sorry he was for what had befallen their son.
Roy turned his back on Kuruvilla, saying not a word. Pat looked directly at him and said, “It’s too late for `sorry.'”
Some say hardship ennobles the human spirit, but that is a comforting myth. More often, especially if it lingers too long, hardship embitters.
It was the length of their struggle, more than anything else, that made it impossible for the Edwardses to feel compassion for Kuruvilla. “I felt he was showboating for the jury, because they still had to decide how much in damages to award Alex,” Roy says.
The full brunt of the verdict fell on Kuruvilla because the hospital that performed the transfusion, and theMD120 blood bank that supplied the tainted blood, quietly settled the lawsuit months earlier. But Kuruvilla’s insurer MICA had been so sure of victory it refused to settle and insisted the case go to trial.
MICA also refused another plaintiff’s offer to settle after the jury decided against Kuruvilla on the question of liability. Kuruvilla’s insurance coverage, though six times the amount carried by most doctors, would pay less than one quarter of the award subsequently handed down by the jury. MICA agreed to make good on the policy only after Kuruvilla threatened to sue the insurer for bad faith.
The negotiated settlement reached last August between Kuruvilla and the Edwardses reduced MICA’s up-front payment to $4.9 million. In the end, however, the amount paid out by Kuruvilla and MICA could total more than the original verdict because it contains the open-ended medical trust for Alex, together with provisions to pay lifetime annuities of $100,000 per year to Alex and $30,000 per year to his parents.
In addition, the settlement specifically allows Pat or Roy Edwards to file a future claim against Kuruvilla should either contract any contagious disease as a result of Alex’s AIDS. It is a heavy price to pay for someone whose only intention has been to help the babies under his care. Nor is the unending threat of more litigation the only currency in which the diminutive, gentle-eyed doctor is paying a price.
“All my life, I have had a desire to help with newborn babies,” Kuruvilla says. “It is so painful because I was so committed. In fifteen years of practice, I never asked if a patient has insurance. It doesn’t matter to me because I am committed body and soul to the baby.”
The Edwardses’ suit remains the only time in his career that Kuruvilla has been sued for malpractice. His stature within his profession remains high despite the outcome, and he was recently named medical director of all newborn nurseries at St. Joseph’s Medical Center in Phoenix. Born in an impoverished village in India, Kuruvilla originally came to the United States to train in neonatology because no training was available in India. He intended to devote his career to saving children in a Third World country, but returned to the U.S. after practicing for three years in Kuwait. “In the United States, you have the latest technology so you can save more babies, and see them grow into healthy group of average citizens is going to look at that little boy, and then at the physician, and be overcome with sympathy for the child.”
Jury foreman Ray Howell, however, says the jury’s answer was not based on emotion, regardless of how it seemed at the time. “The press made a big deal of the fact we had tears in our eyes during some of the testimony, and that I was crying after the damages verdict was announced,” Howell says. “I say anyone who could listen to what happened to that little boy and not be affected is not human. But we had to put aside our emotions when we went into the jury room, that was the judge’s instruction.
“To tell you the truth, after listening to [Kuruvilla lawyer Duane] Olson’s opening statement, I was thinking, `Why are these people suing this doctor?'” Howell says. “But after listening to the evidence presented in the trial, I felt Kuruvilla should be accountable for the decision to transfuse.”
Kuruvilla admitted during the trial that he could not remember Alex, one of hundreds of newborns he treated that year, nor anything about Alex’s case. He never met Alex’s parents during the course of treatment.
Kuruvilla maintained in court that the transfusion, especially in the context of an intensive-care nursery, was routine treatment and most hospitals were not obtaining special parental consent at the time, he said.
The lack of parental consent, coupled with the lack of documentation, played a major role in the jurors’ determination to hold Kuruvilla liable for Alex’s condition, Howell says.
Alex’s family believes he was exposed to the second donor out of plain carelessness–that Kuruvilla could have ordered blood from just one donor but didn’t bother. Testing for the HIV virus, which causes AIDS, came into use about a month after Alex was born, and Alex’s plasma donor was flagged as HIV-positive during a subsequent donation.
After reviewing hospital records of the case, Kuruvilla told the jury he had included the plasma deliberately to help treat Alex’s breathing problem. The fact that Alex’s condition improved steadily afterward demonstrated that it had worked, he said.
The nurse’s note, the only written record of a second transfusion in Alex’s file, said the transfusion was given to replace blood extracted for tests. But that is a routine procedure requiring only red blood cells from one donor, antibiotic; you judge the adequacy by the result it has on the baby’s lung condition.
“The transfusion was given when, according to the hospital records, only six cc’s had been withdrawn for tests, yet I ordered forty cc’s to be transfused, so the argument that it was only given to replace blood out isn’t supported by the surrounding evidence,” Kuruvilla says.
The blood bank delayed notifying the hospital or Kuruvilla for eighteen months after identifying the plasma donor as HIV-positive, months in which Alex was put through a series of excruciatingly painful tests by baffled doctors. The reason for the delay was never resolved because the Edwardses’ suit against the blood bank and hospital was settled out of court.
Howell says, however, that the jury was equally concerned about the doctor’s delay in notifying the family once he had learned one of Alex’s donors carried the AIDS virus. Kuruvilla acknowledges his delay in contacting the family, but denies it arose from any callousness.
“I felt like the whole world was falling on me when I was told of the AIDS exposure [in December 1986],” he says. “I immediately thought of the social implications for the child, the shunning, and how devastating the news would be for the parents. I did not think of litigation. I guess I was naive.”
Kuruvilla claims he delayed only ten days, and then sent the Edwardses and their family doctor a letter saying Alex should be tested again. He was never able to produce a copy of that correspondence, and the Edwardses say they never received a letter.
He did locate a copy of a supposedly similar letter sent to the family of another child who had received blood from the same donor as Alex. That letter, dated in February, asked the family to have their pediatrician contact his office, but said nothing about AIDS. Kuruvilla claims he was not trying to duck the issue, but rather to spare the parents grief as long as possible. “There is an outside chance a person exposed to the virus would not turn positive, and I hoped that would be the case with these families,” he says.
When he did not hear from the Edwardses, he says, he asked his secretary to contact the family. The Edwardses say they received no contact from Kuruvilla’s office until months after the AIDS diagnosis had been made independently by infectious-disease told a reporter the only comfort he found during the monthlong ordeal came when Alex, in one of three brief courtroom appearances, looked directly at the doctor and bestowed an angelic smile.
Roy Edwards says he laughs every time he thinks of Kuruvilla’s remark. “Alex wasn’t smiling at Dr. Kuruvilla–he was sneering,” Edwards says. “If he had looked at Alex’s hand, he would have seen that Alex was flipping him the bird.”
Editor Bodney instructions:
Must use this pullquote.
His parents initially looked like a pair of con artists who’d ripped off the system.
He is about the size of a two-year-old, the age he was when the AIDS virus made its first big push to take control of his body.
Editor Bodney instructions:
Must use this pullquote.
The Edwardses were told by one medico to “just let Alex go.”
“Our attitude is, `This is the cards we were dealt, we’ve got to play ’em through,'” Roy Edwards says.
When the family members learned Alex had AIDS, they believed themselves doomed.
