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Valerie Emerson's battle to keep her HIV-positive son off of toxic AIDS drugs isn't quite over, despite her recent victory in court. The woman at the epicenter of the storm tells Impression why she isn't scared.
Last month, we reported on the stormy court battle over four-year-old Nikolas Emerson. In September, his mother, Valerie Emerson, won the right to keep custody of her HIV-positive son, despite keeping him off all recommended AIDS drugs. The judge, Douglas Clapp, decided that it would be in the child's best interest to stay with his mother, that Valerie Emerson had the right to refuse to give Nikolas AIDS drugs, and that there was no convincing evidence that the various AIDS drugs would do more good than harm.
Valerie Emerson, her family, the doctors who had testified, and even the AIDS organizations in Bangor, Maine, where the decision came down, shared in the jubilation as word of the judge's ruling hit the streets. Emerson was profiled in People magazine, and most of the nation's major newspapers carried the story. Dateline is reportedly working on a story about the case, and Jane Pauley has visited the Emerson household.
This case marks virtually the first time that serious critiques of AIDS therapies have surfaced in the mainstream media in the United States. Some reported the story straight. Others distorted it in a predictable direction. For example, the New York Times reduced Nikolas' AZT-related sufferings to a matter of stomachaches, when in fact the child had been in agony.
The relief that was felt in the Emerson camp was total – the state of Maine had said it would not appeal the judge's decision.
But now the skies have darkened again.
Mary Kay Brennan, guardian ad litem, assigned by the court to represent the interests of Nikolas, is appealing the Emerson case on her own. Her job was to deliver to the judge a recommendation – and she recommended that the judge rule in favor of the state's petition. Brennan is also an attorney, and she will argue the appeal herself.
Brennan has admitted to Paul Philpott, editor of Reappraising AIDS, that she, in the past, represented a major pharmaceutical company, as well as hospitals and one of the nation's largest health care providers. She was also, allegedly, the primary caregiver for her brother, who died of AIDS. Critics worry this will render her extremely biased. No new testimony in the Nov. 3 appeal will be allowed; it will just be Brennan versus Emerson's attorney, Hillary Billings, arguing over the judge's decision.
Valerie Emerson has become an internationally known name – her case a lightning rod for passions that have long been brewing between the medical establishment and the citizens of the United States. When there is a clash of medical opinion, who wins – the mother or the state? Can the state force a mother to give a drug the mother believes will kill her child? In this case, Emerson followed medical protocol precisely with another HIV-positive child, her daughter Tia, who took a turn for the worse while on AZT, and soon thereafter, died. She tried again with Nikolas, and he immediately also took a turn for the worse. What does a mother do when the only way she can be guaranteed custody of her own child is to poison the child – possibly to death? Women across the country are faced with this mind-boggling choice. "It's like Sophie's Choice," says New York City social worker Bud Weiss. "If they have more than one child, the only way they can keep the kids is if one is sacrificed, and follows medical protocol."
Impression decided to talk to the woman at the epicenter of the storm. We reached the soft-spoken, sometimes caustic, and very sharp 27-year-old in her home, and had this conversation over the phone:
Q: Were you surprised by the ruling? What were you expecting?
A: I had my mind set to accept the fact that Nikolas would probably have to be on medication. I did not fear him being removed from my home as much as I did him being on the medication.
Q: How did you hear the news that you'd won the case?
A: I wasn't home. I wasn't going to be home. I was with my mom, and she had her pager on her. My sister called to let me know that my lawyer had gone after the decision. I called from my boyfriend's place of work. My sister said that I made weird noises that she'd never ever heard before in her life. Like I was laughing and crying and gasping for air all at the same time. (Pauses) I almost passed out. And then I cried.
Then I went and did a press conference.
Q: How do you feel about the media's coverage of your case?
A: It sucks.
A: I've had good coverage as far as that I don't think my son should have to take the medication because I feel it should be an informed choice. That part has gotten good coverage. But like, I thanked everybody that was in support of me and I thanked David Rasnick and Roberto Giraldo (doctors who testified) and a man in Florida who had donated $3,000 for the legal fees. I thanked all of them, and none of my thanks was printed. And that really bothered me.
Q: What was it that you felt was most distorted by the media coverage?
A: A lot of it had to do with my daughter. They consistently got either her name wrong or the date of her death wrong. One article stated that she died of AIDS-related pneumonia, which is not what she died of. In People they put me down as a welfare mom. That was kind of derogatory. There was some comment about my mom's stormy relationships. My mother's only been with four men in her life, and three of them she was married to. They've done a pretty good job, but there were things I wish they quoted and they didn't.
Q: Critics of the AIDS orthodoxy have been fruitlessly trying to draw attention to these issues – primarily the danger of AZT toxicity – for over a decade. Your case is the first time the issue has really caught the media's attention. And I think your case will give other mothers in this situation the courage to fight.
A: That's what keeps me going. As a child I can remember sitting in the old homestead and my grandma was sitting there peeling apples for a pie. And she said, "You know Valerie, for everything there is a purpose. God has a purpose for everything in your life. Although you may never know what the purpose is, there is a purpose." It gives me a sense of relief to think that there was a purpose to my daughter's death and my battle for my son – that other people will be helped through my pain. It gives my daughter's death meaning.
Q: It's a huge turning point. A lot of us have been feeling finally, that maybe it is worth it, and maybe there is justice.
A: That's been my thought. Yes.
Q: Tell me about this woman who is appealing the case.
A: She's fighting her own agenda. She was the primary caregiver to her brother and his homosexual partner, as they died of AIDS. It was in the early '80s, and there was a big scare. People would find out she was the caregiver, and they'd back away from her at the store, and wouldn't speak to her. And then she was a pharmaceutical lawyer for years.
Q: She admits she has pharmaceutical ties?
A: Yes, she did to Paul [Philpott].
Q: Does anyone know who is paying for her appeal?
A: I don't know. I know the court appointed her to the case, but I don't know who pays her. I don't know if it's a voluntary thing or what it is. But she's not fighting for my son. She spent all of five minutes with my son and that's it, since March. So how could she fight for his best interest?
Q: How much of this does Nikolas understand?
A: I don't think he really understands that much about it. I think he understands that there's something different about him, compared to his brothers.
Q: It's very traumatic for a child to think they might be taken out of their home.
A: He didn't understand that part of it. I kept it from him. I allowed him to be photographed, but not to be questioned. My oldest child is six-and-a-half, and he didn't even know that his brother had the same problem as his sister, and the state just blurted it out in front of him. I try not to dwell on it, or talk about it too much. They're just kids. And they're only kids for so long.
Q: At what point did you decide – find the courage to fight the system?
A: When they said they wanted to take my kid away. That's all it took. I already lost one child, I said, "Look, you're not taking this one from me." The fact that they were saying I needed psychological examinations to determine my sanity – that pissed me off. I was going to a counselor for a while, I saw three different psychiatrists and they all said, "Why are you here? Your head's on straight."
Q: Whenever a woman gets angry, and tries to defend what is most important in the world to her, she is suspected of being mentally ill.
A: Yep. Women are supposed to be quiet and in the background. The guardian ad litem's plan in the trial was for him to be removed from my care, put in a medical setting for a couple of months and then returned to my care when they had adjusted his meds to the appropriate level.
Q: Is Nikolas' father on your side?
A: Not at all. I had a protection order against him for two years. Whatever I want he wants the opposite.
Q: How is Nikolas now?
A: He's in good health. He's had developmental delays for most of his life and he was evaluated earlier this year and was found to be at his age level in all areas and above his level in certain areas, and that's the first time they've said that about him.
Q: Describe to me what it was like the ten weeks that Nikolas was on AZT.
A: It was hell. He went from being a child that was playing and was happy to a child that was basically immobile, no appetite, didn't eat, stopped growing, his knees swelled up to like twice their normal size. He'd wake up in the middle of the night screaming, and there was nothing I could do to console him. In the morning I'd go pick him up out of his bed and carry him downstairs. His favorite spot to be was on his blanket on the floor, and he'd stay there all day. He wouldn't get up at all. Wouldn't even drink milk unless there was strawberry syrup in it. It was just pure hell.
Q: How did you come to the conclusion that it was the AZT causing it, and not HIV?
A: I had questions about the AZT when my daughter was on it, before she died. When I was pregnant with my youngest, during the pregnancy while I was on the AZT, they found cysts in his brain and they couldn't answer whether it was the AZT. I stopped the AZT, and lo and behold the cysts disappeared. My suspicions were aroused before he was on it. Once he was on it, I gave him ten weeks. They said after six weeks, all the symptoms would lessen or disappear, and I gave him the extra four weeks so they couldn't say, "Well, you didn't give it a good try," and nothing got any better, so the doctor and I stopped it. In court, they wouldn't let my doctor's senior partner testify. He was going to testify that if he ever had a child that was HIV-positive, there's no way he would ever put the child on AZT.
Q: So, after you stopped the AZT, how soon did you see an improvement?
A: Within one or two days. He was always complaining of a bellyache when he was on AZT, and that went away almost overnight. The swelling in his knees went down. All the symptoms went away eventually, and now he's gaining weight, growing, and he's very active.
Q: What are your feelings about the appeal? Are you confident?
A: I'm apprehensive about it on one hand, but on the other hand, I'm not scared about it. They're not allowed to bring in any new evidence. The statutes she's quoted in her appeal – my lawyer says she's misread them and they don't pertain to this kind of thing at all. My lawyer has entered a motion to dismiss. So it might not even make it.
Q: It's maddening that she should be allowed to pursue this if indeed she has ties to the pharmaceutical industry.
A: My lawyer's going to bring that out because it's a conflict of interest. She has another conflict – she has even said it to me, that she was extremely traumatized by her brother's death.
Q: If the decision had gone against you, what would you have done?
A: I wouldn't be in Maine. (Pauses) Every single time one of my children has been hospitalized, there's been some problem. Normally, they've been prescribed an antibiotic they're allergic to. About two weeks before my daughter died, she was in the hospital for pneumonia and they had her on a new IV antibiotic and they wanted to give her an immune boost and I said, "No, nothing to prolong, other than the antibiotic – you're not going to keep doing this to her." She'd already gotten several doses of an immune booster, and I said, "no more", and they ended up doing it in the middle of the night when I wasn't with her, my mom was with her. And yeah, she was better for two or three days, and then it dragged out the end of it more than it should have been dragged out.
They started looking at me funny with her death because I stopped everything two or three days before she died. When they told me there was nothing else they could do, that she was allergic to every antibiotic she could take, there was nothing more that she could do, I stopped everything, even IV fluids. The only thing I allowed was morphine. My doctor was on my side, and the nurse was on my side but – if you leave a body alone when it's dying – by not interfering with the natural process of death, the body produces its own anesthetic and that's what I wanted. The hardest thing to deal with for me now is to realize that my daughter might have still been alive today had she not had the AZT. That's the hardest thing for me to cope with. The only reason I can cope with it at all is because I don't know that for a fact. But she went from relatively healthy, for her, to being very sick all the time, when she started the AZT.
Q: Has all this changed your feelings about being HIV-positive? Do you think HIV always leads to sickness?
A: (Pauses) I don't think it will cause me any harm. I don't think it will cause Nikolas any harm. Even if it could kill me I'm too stubborn to let it. With Nikolas, the developmental delays that he had they said were because of AIDS, but then another expert said no, it's because he was oxygen-deprived at birth. He was a blue baby. The second time they tried to diagnose him with PCP, I allowed a bronchoscope to be done and there was no sign whatsoever of PCP pneumonia, yet they still diagnosed him that way and treated him for it. So, it's hard to say with him. I got different questions going through my head. I think that if they had had the technology fifty years ago that they have today, we would have seen AIDS back then.
One of the reasons I've allowed pictures to be taken of Nikolas, is that he is so healthy. He's such a vibrant looking little boy. Basically, I'm using him as a tool, for that reason, but not in a harmful way because it's a positive thing for him. I want his picture out there. I want people to see how healthy he is. It gives a clearer picture of the rightness of my decision. Whereas if I was saying all this and they couldn't see the child, then they'd doubt it. If they can see him and see that he's happy and healthy, and that he's not on his deathbed and I'm not hurting him, they understand more, or they believe more. They get the full picture.
Q: Do people in your own community give you any comments?
A: Almost every single comment has been positive and supportive. Except for one mother with adopted twins. At two months of age she found out they were positive and started them on meds, and she said, "Don't you know that HIV can go to the brain?"
They already tried to tell me he had the virus in his brain because of his developmental delays. I said, "You show me the virus and I'll believe you." It makes me sick to think how these doctors brainwash these mothers. I was one of those mothers for a while. They kept telling me my kid was going to die. I don't how many times I heard, "If you take this child out of the hospital, the child will be dead in the morning."
Q: Dead in the morning?
A: I heard that with both Tia and Nikolas.
Q: In the court case, didn't they take into consideration the trauma of removing a child from the home?
A: That factored strongly into the judge's decision. I testified on the stand that to remove Nikolas from his home would kill him. Whether you put him on the medications or not, to take him away from me is to kill him.
© 1998 by Celia Farber
Originally published in Impression magazine