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BANGOR – Valerie Emerson had been ready to disappear for days by the time the judge reached his decision.
The car had a full tank of gas. The trunk was crammed with clothes. A road map was marked with safe houses across the country where she and her three boys could seek refuge.
Emerson was so convinced she would lose custody of her son Nikolas because of her refusal to treat the boy with powerful AIDS drugs that she already said good-bye to her mother.
She never wavered. The single mother watched her AIDS-infected daughter succumb to an agonizing death while on AZT, and she vowed to let nature take its course with Nikolas – even if it meant fleeing her home.
So when Judge Douglas Clapp ruled in Emerson’s favor, she slumped to the floor in disbelief, gasping for air and mumbling incoherently.
David had slain Goliath. She could keep her son.
Two years later, Nikolas Emerson is a happy-go-lucky, 6-year-old kid. He’s doing well in the first grade, and likes Nintendo, riding his bike, and playing with his brothers. He likes to be active, preferring rough-and-tumble play to quiet activities.
With the exception of a chronic ear infection that his doctor attributes to a suppressed immune system, Nik is as rambunctious and playful as any other kid his age.
About 21/2 years ago, he was at the center of a landmark custody battle that hinged on a mother’s right to make medical decisions for her child: Maine’s Department of Human Services sued for custody of Nik because she wouldn’t treat him with the AIDS medicine.
The state fought Emerson all the way to the Maine Supreme Judicial Court, which sided with her on Nov. 19, 1998.
“With the relative uncertainty of the efficacy of the proposed treatment, it can only reasonably be left up to the parent to make an informed choice in this regard,” Chief Justice Daniel Wathen wrote in the opinion.
Emerson, a single convenience store clerk with a high school education, still reminds herself that she won.
“I was totally prepared to hear that I had lost,” the 28-year-old woman said. “But I knew in my heart that I was right.”
Her case drew international attention and became a lightning rod for others in similar situations, including a case in Oregon where an HIV-infected woman successfully fought the state for the right to breast-feed her baby.
Emerson, who is also HIV-positive, made the rounds of talk shows after winning her case, but she prefers to stay out of the spotlight. After coming so close to losing Nik, every moment with her sons is precious.
“We’re all really close,” she says. “They’re my boys. They’re everything to me.”
Emerson discovered she was HIV-positive when she was pregnant with Jakob. When doctors tested her three older children, two of the tests came back positive: 3-year-old Tia’s and 2-year-old Nik’s.
She and Tia began taking AZT, one of the most powerful AIDS medications available at the time.
Tia, who had already been sick with pneumonia on and off during her short life, reacted badly. She died a painful death in her mother’s arms shortly before her fourth birthday, in January 1997.
Despite her misgivings, and despite Tia’s death, Emerson began giving AZT to Nik and continued taking it herself.
The effects were severe.
Her legs ached. Her head pounded. Her stomach churned. After she took a shower, handfuls of hair clogged the drain. When she began vomiting blood, she stopped taking the medicine.
If the drugs make me feel this sick, she wondered, what were they doing to Nik?
He couldn’t eat. He was pale and listless. He no longer played. He no longer laughed. His moans kept him awake.
Fearing she would lose another child, Emerson stopped giving Nik the medicine. Nik’s physician, Dr. Jean Benson of Bangor, agreed.
“Nik wasn’t growing. He was pale. He complained about belly pain. He was lethargic and didn’t play. He whined all the time,” Benson said. “When we took him off the medication, he started running up and down the hall.”
Within weeks, he became a happy, healthy boy again.
“The pain in his legs stopped immediately. The pain in his stomach went away within a week. His appetite returned,” Emerson said. “He went back to being happy and active.”
A child like Nik born with HIV who follows a regular regime of AIDS treatment has a life expectancy of at least 20 years, according to the Centers for Disease Control in Atlanta.
A child born with HIV who does not take AIDS medicine – like Nik – is only expected to reach 9, the CDC said.
Emerson doesn’t have much faith in the statistics.
“When Nik was born, doctors told me he wouldn’t live past three. They told me he’d never write his own name, he’d never sing the alphabet and he’d never read,” Emerson said.
“He’s done all those things,” she added. “The only thing left for him to do is graduate high school and live to 50.”
She and her boys take things day by day, living a quiet life in a small town outside Bangor. Her sons, Nik, 5-year-old Jakob, and 9-year-old Zak, are energetic, outgoing boys with broad smiles, pink cheeks and bubbling laughter. Both Jakob and Zak have tested negative for the HIV virus.
“Parents with kids who have HIV have rights, too,” Emerson said. “They can make choices. All any parent can do is follow their heart.”
The case ended up in the courts after Nik’s doctor suggested that they see a specialist about a new drug regimen.
Emerson agreed to see the specialist, but she didn’t agree with his suggestion that she try another treatment, the so-called “triple-cocktail” that has replaced AZT as the treatment of choice for HIV.
She had briefly taken the protease inhibitors herself, shortly after Tia died, after doctors recommended it as a revolutionary alternative to monotherapy. But Emerson felt the side effects were just as severe as AZT’s, and didn’t even want Nik to try the cocktail.
The specialist, Dr. John Milliken of Bangor, was troubled by Emerson’s decision to ignore his advice. Why, exactly, had she chosen to stop antiretroviral treatments? Didn’t she know it could possibly save her son’s life?
Milliken reported his concern to the state’s child protective agency. In turn, the state delivered an ultimatum to Emerson: Give Nik the cocktail that scientists believed could reduce the virus to undetectable levels, or face a custody battle.
Emerson refused to be intimidated. A woman who was shuffled around between 16 foster homes in four years as a teen-ager, she was loathe to let her son enter what she claims is a failing child protective system.
“I knew she was a parent acting in good faith who had gone out of her way to make sure she was well-informed,” said Hillary Billings, Emerson’s lawyer. “I knew we had a fight on our hands.”
Testifying at the 1998 custody hearing was David Rasnick, a research chemist whose views on AIDS are at odds with those of mainstream medicine. Nearly three years later, Rasnick still believes that by not taking the AIDS medicine, Nik has a better chance of living a long and healthy life.
“Doctors said to put Nik on the drugs, and he got extremely ill very quickly. It was clear the drugs were doing it,” he said from the University of California at Berkeley, where he is a visiting scientist.
Mainstream researchers believe the cocktail is more effective than the AZT treatment used to treat Emerson’s daughter.
Dr. Katherine Luvuriaga of the University of Massachusetts Medical School recommends treatment for children, as well as adults.
“In the very early years [treatment] was primarily with AZT, but now we have a wider variety of drugs to choose from and a little more latitude on drugs for children,” she said. “The strongest recommendation is that children be treated as early as possible. It’s one I strongly support.”
In his decision granting custody to Emerson, Clapp, the Maine District judge, said research hadn’t provided definitive answers.
“The mono therapy, which the best doctors told Ms. Emerson was appropriate for her daughter many months ago, failed fatally and is now not recommended by the same experts,” he wrote in his 14-page decision.
“Instead, they have recommended a more aggressive and powerful therapy. They may be right in this advice,” the judge said. “Current statistics can be interpreted that they may also just as likely be wrong. If so, they will move on to a better and more informed attempts to cure this, but Ms. Emerson will bury another child.”
Emerson’s ex-husband, Ryan Dubay of Bangor, wanted the state to take custody of Nik so he would be given the drugs. Dubay, who is also HIV-positive, could not be reached for comment. He had no phone listing in the area and Emerson had no number for him.
Maine’s supreme court upheld Clapp’s decision but also gave the state authority to step in if Nik’s health should deteriorate.
“Neither the parents nor the state should assume that the trial court’s decision … is necessarily the final word on treatment for Nikolas,” the chief justice wrote in the ruling.
That means the state child protective agency will always have a foot in the door of her life. But these days, Emerson is more philosophical than fearful.
“I have faith that God will not give me more than I can handle, and I believe in good things,” she said. “I’m not scared. Nervous, yes, but not scared.”
Emerson believes the future is bright for her little family. She is in a solid relationship, her sons are happy and doing well in school, and she is considering taking culinary classes.
Nik is oblivious to the virus that runs through his bloodstream. One day, when he is much older, she will tell him about the deadly virus and why neither of them takes the medicine used to treat acquired immune deficiency syndrome.
She’ll show him the pictures of his older sister, Tia, whom the little boy barely remembers.
She’ll remind him every day of how much she loves him, and how glad she is that they are together.
And they will continue to live life one day at a time, just as they have ever since HIV entered their lives.
“My grandmother always said that for everything in life, there is a purpose,” she said. “I thought, I have HIV. What purpose is in that? But now I know – it’s to help people. And that’s OK.”
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