December 22, 2024
BANGOR DAILY NEWS (BANGOR, MAINE

Mother battling DHS over son’s treatment for HIV gets support > Emerson says going public has helped case

Like thousands of other Maine mothers, Valerie Emerson made the requisite back-to-school buying binge this fall. But as she walked through the aisles of notebooks, sneakers and baggy jeans at Ames department store in Bangor, she was anything but an anonymous mom of three.

“Every time I turned around, it seemed like there was another person asking me about my son, or wishing me luck,” said Emerson, the 26-year-old mother who was propelled into the spotlight in July when she made public her defiance of the state’s attempt to force her son to undergo therapy for HIV infection.

Relaxed and confident during an interview, Emerson spoke of the local and national interest the case has stirred.

“I’m a private person, so to allow any of this is a big step for me,” she said. “After I did my first interview, I wasn’t sure what people’s reactions would be. I was surprised. I’ve had absolute strangers come up to me and ask me if I’m Valerie Emerson,” she said.

And what kinds of things do they say to her?

“You’re in my prayers,” and “Fight ’em,” and “You know best what’s right to do — he’s your baby.”

Her baby is 4-year-old Nikolas, whose medical treatment has become the object of a tug of war between Emerson and the Maine Department of Human Services. In late 1996 Nikolas began taking AZT, which was the standard — but largely ineffective — drug used to retard the proliferation of HIV, which is believed to cause AIDS. But for the 10 weeks he took it, Nikolas cried, moaned and lay dormant, Emerson said. He experienced “night terrors,” from which he woke screaming, and his knees swelled to twice their normal size.

Nikolas’ big sister, Tia, also suffered severe side effects from similar treatment for her HIV infection. She died of bacterial pneumonia in January 1997, shortly before her fourth birthday.

The state filed a petition for a child protection order in May, and this summer Emerson went public with her story. She said she believes the publicity has helped her case in a state that has a strong libertarian disposition. She said people have shared stories about their own frustrations in dealing with the DHS.

Kevin Concannon, commissioner of the Department of Human Services, said this week that publicity over the case will have no bearing on the department’s position. The DHS has historically been mum when it comes to commenting on child protection cases because state law forbade any official disclosures.

But legislation passed last year permits the DHS commissioner to make limited comments on child protection cases if the parent or guardian of that child chooses to make the case public. In this case Emerson first told her story to the Bangor Daily News in July. Since then, DHS officials have commented in interviews with The Boston Globe, “Good Morning America” and “Dateline NBC.” The BBC and MSNBC have also done stories.

“We’re taking this action in the interest of the child,” Concannon said. The department believes that the treatment will give Nikolas “a better shot at living into adulthood.”

Ultimately, the decision over who will have say over Nikolas’ treatment will lie with a District Court judge. A hearing is scheduled for Thursday.

Emerson was recently interviewed by Jane Pauley for an upcoming broadcast of “Dateline NBC.”

It took the film crew four hours to set up for the shoot at her attorney’s home. “They put some kind of gel on the windows to soundproof the room,” she said. “It was all kind of bewildering.”

Pauley took a short hiatus from a vacation to fly into Bangor for the three-hour interview. “It was very positive, very relaxed,” Emerson said. “I do think it will do away with [the state’s] saying I’m confused and disoriented since my daughter’s death.”

Emerson admits to being a stubborn person, but calls it an “informed” stubbornness. She may be opposed to giving Nikolas therapy at this point in his life, but, she said, it is a decision that comes from studying the literature on AIDS and her experience with Tia and Nikolas while taking the drugs. Tia suffered from stunted growth, a condition that Emerson attributes to the drugs she took.

At this point, Nikolas is doing well. “His quality of life right now is the best it’s been in his life,” she said. He is behind in communication skills, but he heartily plays with his brothers, Zakary, 6, and Jakob, 2, neither of whom is HIV-positive. Emerson did not learn she was HIV-positive until she was pregnant with Jakob.

Emerson said that she will not consider starting aggressive treatment on Nikolas until he shows more HIV-related symptoms.

“It’s the only way to maintain some sort of normalacy,” she said. “If I can keep it away from him for a couple more weeks, a few more months, so he can be a little boy, that’s what I’m going to do.”

At the same time Emerson has become more public with the case, she has attempted to pull her children out of the limelight. She said she no longer allows her other two children to be filmed or photographed. Zakary grew increasingly agitated after contact with the media and DHS officials, she said. She does not allow reporters or photographers into her home, which is in the Bangor area.

The case stems from the conflicting opinions of two doctors who specialize in pediatric infections. While both Dr. Kenneth McIntosh of Boston and Dr. Jeff Milliken of Bangor recommend Nikolas undergo therapy, McIntosh suggested that it be done only with Emerson’s support. Milliken notified the child protection division of the DHS last fall.

According to Denis Cranson, the executive director of Eastern Maine AIDS Network, despite the success some HIV-positive people have had in lowering the detectable levels of virus in their bloodstream with the new drugs, the treatment is not a “cure-all.” Undergoing the therapy is often a choice of sacrificing quality of life for quantity of life, he said.

“The other issue is that these drugs are very toxic, and most testing has been done only on adults,” he said. “The drugs have been approved by the FDA, but they have not been around very long. We don’t have much empirical evidence about what their long-term effects are.”

While the AIDS Network will not publicly take a position on the Emerson case, Cranson said he is concerned about the precedent that could be set if the court finds in favor of the state.

“We’re looking at tens of thousands of kids potentially being affected by this decision,” said Cranson, who said he knows of no case similar to this one.

“Would the state’s actions be the same if the disease were cancer and the treatment being considered were chemotherapy?” Cranson asked. “Would it be on `Good Morning America’ and `Dateline’?”

According to data collected by the American Civil Liberties Union, in cases where parents withhold treatment for religious reasons, courts in America have historically considered the probability of successful treatment in deciding whether to allow states to step in.

For example, state courts have ordered treatment in a case where a child had a better than 50 percent chance of surviving with a blood transfusion and in a case where chemotherapy offered a 75 percent chance of short-term remission. However, another court did not order radical chemotherapy that was deemed to have only a 40 percent chance of success.

In cases where parents have nonreligious objections, courts also consider the seriousness of the condition, the potential harm without treatment, the wishes of the child and the risks involved.

The effects — and side effects — of anti-retroviral therapy are less documented in small children than in adults. According to guidelines for treatment released by the Centers for Disease Control and Prevention this summer, the criteria used for making decisions about beginning therapy in adults do not apply directly to infants and small children. Nevertheless, the guidelines recommend that “most, if not all, HIV-infected children should be treated” with combination anti-retroviral therapy.


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