Elaine Ramos has twochildren fourteen years apart. There's Brandon, who's 22, and 8-year-old Kara, a lithe, outdoorsy girl who likes to collect rock and plant specimens as if she were Dorothy Ann on The Magic School Bus. Elaine, a clinical-social-work supervisor married to a professor of fine arts, is usually as diligent a food cop as any parent. But on the night in May when the family went out to celebrate Brandon's graduation from Bard College, she got caught up in the toasting and celebration. Not until Kara pushed her burger to the edge of her plate, two thirds uneaten, did her mother anxiously note that the center was bright pink.
Five days later, Kara developed stomach cramps that made her howl with pain. Every day she spent in a community hospital near her New Paltz home grew more harrowing for the family as her E. coli infection kept fulfilling worst-case scenarios. The Ramoses were stunned to learn that there is no medicine to combat the brutal bacteria. Kara was being hospitalized for as long as it would take the toxins to march through her body, largely so doctors could pounce if her kidneys shut down or her blood cells became so damaged she would need transfusions. The pain intensified. Normally a hugger, Kara began to scream at her mother's touch.
On her fourth day of hospitalization, she was diagnosed with a life-threatening condition, hemolytic-uremic syndrome (HUS), and transferred by ambulance to Westchester Medical Center. No sooner had Dr. Robert Weiss, a pediatric nephrologist, examined Kara in the emergency room than he asked her parents to make a critical decision: Would they let her become the twenty-eighth American child to take an investigational anti-HUS drug? Weiss assured the Ramoses that this compound of sugar and synthetic sand, designed to prevent toxins from being absorbed into the bloodstream, had no known systemic side effects. But, as with any trial drug, the long-term implications were unknown. On the other hand, it was all he had to offer. And the likelihood loomed that if Kara continued deteriorating, she could face long-term dialysis, or worse.
Elaine had had one full night's sleep in the previous five; at this point her daughter was rasping from thirst and looking, in her mother's words, "dreadful -- horribly white." Kara's crisis had struck just as Joe was beginning his first week as chairman of the fine-arts department at SUNY New Paltz, and he'd been ricocheting between hospital and job.
"This decision is thrust at us -- they want us to decide then and there," Joe recalls, a lingering resentment still edging his voice. "I feel like I don't have the training; I don't have the facts. I'm in a situation where I'm physically and emotionally drained, and I have to make a decision that's medical."
On the other side of this conversation was Weiss, struggling to convey empathy yet eager to enroll a perfect candidate in a study that, he believes, holds great promise. "As much as we're giving them written material, and we're talking very gently and very slowly, it's difficult to make people think about a study when they just want their kid to get better," Weiss says later. "They don't want to listen to this stuff, and it's scaring the pants off them. You can see it in their faces."
The Ramoses took the five-page consent form. They were afraid to say yes and afraid to say no. Weiss would wait "twelve nail-biting hours," by his description, to hear their answer.
There's something about a child's falling into serious medical peril that seems almost anachronistic in this age of bicycle helmets and antibacterial soap, of the well-fed, vitamin-fortified, fully inoculated kid. So those parents who have come to understand the burdens of life-and-death decision-making in an era of technological explosion form an isolated and disoriented club, one whose members meet at night in the lounges by the pediatric ICUs. With the armamentarium of cure growing more sophisticated by the day -- especially in New York, a hive of research scientist-physicians and teaching hospitals -- few crises arise that don't present parents with treatment choices. The rarer and deadlier a child's situation, the more energetically doctors urge parents to shop for additional opinions; the more specialists parents consult, the more the uncertainties pile up.
Complicating matters are the tools of modern imaging, which can detect potential defects that, just years ago, would have gone undiscovered. Doctors often can't predict whether these conditions will mend on their own or cause irreversible damage, leaving parents to decided how aggressively to intervene. On the evidence of a dimple on their newborn Danielle's backside, Judi and David Salvatore, both of them teachers in the Jersey Turnpike town of Carteret, had to have their apparently healthy daughter's spine MRI'd within weeks of birth -- and were then offered elective surgery to prevent a paralysis that might or might not develop. But at what risk to Danielle from the surgery itself?
"These are choices parents didn't have to face ten years ago," notes the family's pediatric neurosurgeon, Neil Feldstein. "They are tough calls." After Danielle's MRI, the Salvatores were stalled in frustration as they sought not only Feldstein's but two -- and, eventually, three -- more opinions. "We had all these professionals working for us," David Salvatore recalled, "and we couldn't get two of them to agree on anything. So how the hell were we supposed to know what to do?"
Or consider the case of Carmen and Craig Schoenfeld, an executive secretary and a meat distributor living in Rockland County. They're the parents of Aaron, whose rare rhabdomyosarcoma was detected following a well-baby visit when he was five months old. One of more than a dozen parents who described to New York their struggles in reaching treatment decisions, Schoenfeld says she could hardly endure listening to her pediatric oncologists and radiologists as they presented the choices: Submit Aaron either to radical surgery or to chemotherapy backed by potentially bone-stunting radiation. Carmen initially refused to consider either surgery or radiation. She says, "They didn't know what the story would be with Aaron's outcome, so why should I take a chance on my son?''