THE NIGHTMARE CONTINUES
By Celia Farber
Impression Oct. 1998
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.
Q: Really?
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.