August 12, 2001

Mother of HIV-Infected Boy Still Favors Ruling

Health: In 1998, a Maine court said the boy, now
an active 6 did not have to be treated with powerful AIDS drugs.



BANGOR, Maine -- 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 throughout the country where she and her three boys could seek refuge. She had already said goodbye to friends.

That's how certain Emerson was that she would lose custody of her son Nikolas--because of her refusal to treat the boy with powerful AIDS drugs. She never wavered. The single mother had 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 and mumbling incoherently.

She could keep her son.

Two years later, Nikolas Emerson is a happy-go-lucky 6-year-old. 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 as any kid his age. He does not undergo regular blood tests, as many AIDS patients do to monitor the disease. His mother says she sees no reason to conduct the tests since he has had no major illness in three years, but would reconsider if his symptoms change.

About 2 1/2 years ago, he was at the center of a landmark legal battle: Maine's Department of Human Services sued for custody of Nik because Emerson 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.

Because the medicine's effectiveness is uncertain, Chief Justice Daniel Wathen wrote in the opinion, "It can only reasonably be left up to the parent to make an informed choice."

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."

Emerson had discovered she was HIV-positive when she was pregnant with Jakob, her fourth child. When doctors tested her three older children, two tests came back positive: 3-year-old Tia's and 2-year-old Nik's. Jakob, who is now 5, and her firstborn, Zak, now 9, have tested negative for HIV.

Emerson and Tia began taking AZT, one of the most powerful AIDS medications available at the time.

Tia, who had 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 4th 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 made her 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.

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 and Prevention 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 3. 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 are energetic, outgoing boys with broad smiles, pink cheeks and bubbling laughter.

"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 didn't agree with the specialist's suggestion that she try one of the newly introduced three-drug combinations that had become the mainstay of AIDS care. These so-called drug cocktails, which included powerful medicines called protease inhibitors, had revolutionized the treatment of HIV, changing it from a death sentence to a chronic, manageable infection for many.

She had briefly taken the protease inhibitors herself, shortly after Tia died. But she believed the side effects were just as severe as AZT's and didn't want Nik to try the cocktail.

The specialist, Dr. John Milliken of Bangor, was troubled by Emerson's decision and reported his concern to the state's child protective agency. 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. Having been shuffled around between 16 foster homes as a teenager, she was loath 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 her lawyer, Hillary Billings. "I knew we had a fight on our hands."

Among those testifying in support of Emerson's decision at the 1998 custody hearing was David Rasnick, a research chemist whose views on AIDS are sharply at odds with those of mainstream medicine. He has denied that HIV causes AIDS or even that AIDS is an infectious disease.

"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 UC Berkeley, where he is a visiting scientist.

Mainstream researchers believe the cocktail is more effective than AZT treatment.

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 attempt 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.

Maine's Supreme Court upheld Clapp's decision but also gave the state authority to step in if Nik's health should deteriorate.

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."

"My grandmother always said that for everything in life, there is a purpose," she added. "I thought, I have HIV. What purpose is in that? But now I know--it's to help people. And that's OK."