A Mother’s Medical Dilemma Turns Into One for the Court

Valerie Emerson of Bangor, Maine, had watched her 3-year-old daughter endure an agonizing death while taking the anti-AIDS drug AZT. So when her son, Nikolas, started suffering during his AZT regimen, Emerson stopped all treatment. Then came the prospect of greatly improved results from newer, more aggressive three-drug AIDS “cocktails”--and a concerned doctor’s plea that they be used. No way, Emerson declared: “I don’t want my son to go through the same pain my daughter did. I’m doing what’s right in my heart. That’s all I can do.”

The problem: The state of Maine also valued “doing what’s right”--but had an entirely different notion of what it involved. The law, after all, obligates the state to protect a child from harm. When medical experts advised that not treating Nikolas just “isn’t an option,” Maine’s Department of Human Services filed a petition for a child protection order. The case, apparently unprecedented, came before Maine District Judge Douglas Clapp on Sept. 10.

Courtrooms are not, as a rule, a good place to make decisions about moral dilemmas, although that rarely keeps lawyers and judges from trying. What set Clapp apart was a recognition of his limits, and the law’s. In a matter so complexly uncertain, who was he or the law or the state to tell a mother what to do?

All parties left the courthouse sounding uncommonly satisfied with this judgment. The state’s human services commissioner appreciated and respected Clapp’s “speedy and thoughtful decision.” Emerson was “so shocked I almost passed out, to tell you the honest-to-God’s truth.”

The only question remaining: Was the judge right?

A Mother Learns She Is Infected

Emerson, 28 now and estranged from her husband, who is also HIV-positive, learned she carried the virus when tested during a routine prenatal screening. Soon after, she learned she’d passed the virus to two of her four children, Nikolas and Tia.

Emerson herself remained symptom-free, but her son and daughter didn’t. Tia sank first and only seemed to grow worse when Emerson gave her doctor-ordered drugs, including AZT. In January 1997, she died of pneumonia.

By then Nikolas, 2 1/2 at the time, was sick too. He began taking AZT. During 10 weeks on the medicine, he cried through the night, hardly eating or drinking, his knees swollen to twice their normal size. “I could do nothing to comfort him,” Emerson told local reporters. “I’d go in and I’d hold him, and nothing I did would console him.”

She eventually stopped Nikolas’ drug treatment. Since then, at least to her, Nikolas has looked to be a “happy-go-lucky little guy . . . in perfect condition.” Nevertheless, in August 1997, Emerson’s family physician, Jean Benson, recommended that the boy see Dr. Jeff Milliken, a pediatric infectious disease specialist in Bangor.

Milliken didn’t think Nikolas was in perfect condition. He diagnosed AIDS, and, among other ideas, recommended an aggressive antiretroviral therapy involving three drugs taken in combination. By then, such multiple-drug cocktails had replaced AZT as the standard of care for HIV-infected adults, if not children.

The cocktails were daunting to administer and sometimes involved severe side effects. Doctors were still experimenting with how and when to use them. No one could guarantee positive or lasting results. Yet for many, these multi-drug cocktails had proved highly effective. They were the best shot the doctors had to offer. Milliken thought Nikolas had “some benefit to be gained” from their use.

No, Emerson said, breaking into tears in the doctor’s office. Her son wasn’t a guinea pig, she wanted it known. He was a little boy with feelings. He should be playing outside, not lying in pain all day long. “That’s not life,” she declared. “That’s torture.”

Milliken plainly had much difficulty with this stance. He found Emerson “desperately argumentative” and “difficult to cope with.” In November 1997, after “pondering” and “agonizing” for two months, he wrote Emerson’s family physician. Nikolas’ medical management, he argued, “is too much under the direction of his mother. . . . She is thinking only that he will die. She clearly is making decisions in a state of confusion and/or depression. She appears to be allowed the luxury of making decisions which lead inevitably to the demise of the child.”

As it happened, these words didn’t sit well with Emerson’s family physician. Benson felt Milliken was “misinformed.” She felt he’d “failed to consider the psychosocial and emotional issues involved in this case.” There was little she could do, though. By then, the dispute reached well beyond these two doctors.

Milliken hadn’t sent his letter only to Benson: He’d sent a copy to the child protection unit in Maine’s Department of Human Services.

State Officials Enter Uncharted Territory

State officials found themselves on uncertain ground when they entered the case in February. They had a specialist urging their intervention and a family physician wishing them to back off. So they requested a third opinion.

Dr. Kenneth McIntosh, chief of the division of infectious diseases at Children’s Hospital in Boston, provided one that left matters as muddled as before. After an evaluation in March, he described Emerson as “definitely rational” but “badly traumatized” by her experiences with Tia. Like Milliken, McIntosh recommended a three-drug cocktail--but only “if the mother buys into it.” Because treating children with HIV is “complex, long-term, difficult and not necessarily a sure thing,” he didn’t recommend “invocation of child protective services.” Better to “work with” Emerson, “although it will take patience.” Any attempts to remove the child “would be very counterproductive.”

Unpersuaded by McIntosh’s words, the Department of Human Services in May filed its petition for a child protection order, saying Emerson had put her son in “circumstances of jeopardy to his health and welfare.”

For years, groups on the fringe of medicine have argued that current anti-AIDS therapy is not only ineffective but dangerously toxic. Emerson, who’d learned of their theories through her own research, first went public with them in July. Sitting in her lawyer’s office, where one reporter for the Bangor Daily News found Nikolas with red bumps on his face and body, Emerson began informing reporters that doctors weren’t “telling the whole story.” She couldn’t see “treating a terminal illness with a medication that’s only going to cause another terminal illness.”

DHS commissioner Kevin Concannon responded: “There have been advances in medical treatment since this earlier sibling died, and all the medical advice we’re getting [is that] it’s important to get this child treated early.”

Was it, though? Once past the flurry of claims, this for Clapp remained the central question. It mattered less whether Emerson was right than whether her refusal of treatment amounted to neglect.

It could be argued that the eight-page ruling Clapp issued Sept. 14 reflected all this conflict in the only way it could. “Although DHS proved Nikolas would benefit from treatment according to conventional medical wisdom, it has not sufficiently proven what the benefit will likely be.” There simply was not “a sufficient basis to feel that the child’s health . . . was in jeopardy.”

Emerson had made a “rational and reasoned” decision. She “feels that she has willingly and in good faith surrendered up the life of one child to the best treatment medicine has to offer and does not want to do the same with the next. . . . The state of Maine is in no position to tell her in the face of her unique experience that she is wrong in her current judgment.” If her decision “is wrong and [has] exposed Nikolas to jeopardy, it is only because the current body of information available to any mother in her situation is limited or conflicting.”

‘We Wish the Child and the Mother Well’

In recent days there has been a general sense of victory achieved and wisdom realized in this matter. The public battle has ended with a flurry of appearances on national radio and TV shows. The DHS commissioner now says he has no plans to appeal. He thought the hearing full and fair and offered his blessings: “We wish the child and the mother well.”

It’s hard not to hear in all this the sound of retreat, rather than true resolution. No longer is there much talk of “working with” Emerson, of “persuasion” and “counseling,” although that was the first choice of everyone from Emerson’s attorney to the consulting physician Ken McIntosh. Instead, a boy will likely die of a disease that could possibly be treated, or at least held off. Clapp didn’t so much resolve a dilemma as take a side.

“I plan to go home and hug my little boy and play games with him and my other two kids and be a family and know it’s going to stay that way,” Emerson declared during an emotional post-trial news conference in her lawyer’s office. “I am so happy my dear little boy will be allowed to be happy and healthy.”

If only that were so.