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An HIV-positive mother in Oregon almost loses custody of her baby because she resists giving him AZT and wishes to breast-feed him. Impression looks at the continuing attack on families in the name of HIV heroica.
The diabolical brilliance of the HIV-AIDS paradigm is that it lies in wait, invisibly, quietly, then closes in like an ocean net. The net is comprised of a chicken-shack belief system – never solidified or validated, yet passionately adhered to by its disciples: AIDS is caused by the retrovirus HIV. AIDS is always fatal. HIV must be fought and killed.
The place where the AIDS machinery with its manic dictates intersects with the American (in the idealized sense of the word) public is where the story really gets interesting.
Consider the case of the Tysons, a straight-arrow American family living in Eugene, Oregon.
David Tyson had two children from a prior marriage, now teen-agers, and he and his wife, Kathleen, had one child together, now 10 years old. Kathleen discovers to her surprise that she is pregnant, and the couple adjust to the idea of another child. They are happy. They seek out a midwifery clinic where they want the baby born and set about tending to all the details of a new baby.
Technology being what it is, lots of tests are run. Kathleen, 38, in her seventh month of pregnancy has her blood drawn. She and David have been monogamous for more than 13 years. She is healthy. In fact, she is a runner. Her 10-year-old daughter is healthy. David is healthy. Nothing to worry about.
The phone rings.
A concerned voice summons them down to the clinic. They ask David to remain in the waiting room while they take Kathleen in to the office and deliver the shattering blow. She is HIV-positive. They give her all the room she needs to cry. They give her tissues. They give her advice. No, they give her orders. The Tysons are in the net now. Kathleen is placed on a multidrug cocktail of AZT and a few protease inhibitors. Each of the three or four drugs she forces down daily have been contraindicated in pregnancy. They are all mutagenic, teratogenic and carcinogenic. ("Teratogenic" stems from the Latin root teratos, which means monster.) AZT, as we know, gets delivered for research purposes in bottles bearing labels with a skull and crossbones and dire warnings of what to do if one were to accidentally ingest it. (Call your doctor!)
But throwing all post-Thalidomide prenatal conservatism to the wind, we have now careened from giving nothing, not even an aspirin, to pregnant women, to giving cocktails of experimental, toxic drugs to pregnant women. Only, of course, in the event they harbor antibodies to the dreaded HIV.
So Kathleen, after recovering from the shock, goes and gets her pills and takes them at a whopping cost of almost $300 for a 10-day supply, which the Tysons have to borrow money to pay for. Not surprisingly, she feels very sick all the time.
She wonders how it is possible for doctors to give all this to a pregnant woman, but she shrugs off her doubt because they must know what they're talking about.
But then she opens a door of perception, by sheer fluke, that tumbles her into the other side of the AIDS war. A copy of Mothering magazine peeks out from a rack in the local health-food store, and she spots the headline "AZT Roulette." (I was the author of that article.)
Now she reads that there are questions, that HIV tests can cross-react, that most mothers don't transmit HIV anyway, that even if they do, it wouldn't necessarily lead to a sick baby, that AZT is dangerous to a growing fetus, and that there is no evidence whatsoever for the widely held belief that HIV transmits through breast milk.
Kathleen and David log on to the Internet and start their odyssey of research. They find Peter Duesberg's Web site; they buy Robert Root-Bernstein's book Rethinking AIDS. They read, they call around, they go to the library, and finally, they arrive at a conclusion: They decide to treat HIV as though it were a dull, ordinary, harmless passenger virus in an otherwise healthy person. After all, Kathleen's body had shown no sign of damage after what is supposedly a 13-year-old HIV infection – her T cell counts are perfectly normal, and her "viral load" is almost undetectable.
Two weeks before her due date, Kathleen goes into labor, and winds up needing an emergency Caesarean section. Felix Tyson was born on December 7, 1998, and weighed 7.7 pounds.
"The first thing was, they tried to give Kathleen IV AZT during the delivery," says David, on the phone from the Tyson home. "I stopped that."
As Kathleen was recovering, she was visited in the hospital by an infectious-disease pediatrician with a very unpleasant bedside manner who started talking about the "protocol" for women such as Kathleen, which is AZT for the baby for six weeks and no breast-feeding. Kathleen said no thanks.
"We told her that we had done a lot of our own research and concluded that that was not the course of action we were choosing because it seemed risky, and we didn't know what the long-term effects of AZT would be on our son," Kathleen says.
The Centers for Disease Control and Prevention specifies in its recommendations that: "Discussion of treatment options should be noncoercive, and the final decision to accept or reject AZT treatment recommended for herself and her child is the right and responsibility of the woman. A decision not to accept treatment should not result in punitive action."
But in the real world, here's what happened: The pediatrician went "ballistic" and started railing against the Tysons and Peter Duesberg and finally issued a threat. "She said she was going to have to contact...the ethics board," recalls Kathleen, "and the lawyer of the hospital."
In tears, Kathleen asked her to please leave and called David in a panic.
"When I got the call from Kathleen," David says, "her voice was so distorted with terror and emotion that I didn't even realize it was her. I thought it was my 16-year-old daughter and that somebody had beaten her up or something terrible had happened."
He raced to his daughter's house nearby and only then realized it had been Kathleen on the phone. When he got to the hospital shortly thereafter, he says, "They had cordoned off the maternity ward to make sure we didn't escape."
"And these guys had guns," says Kathleen, sounding as if she were retelling a bad dream. "They had guns – in the hospital on the maternity-ward floor."
"I went over and looked out the window," David says, "and down one story was a terrace. I considered ways of tying the bedsheets together and transporting my wife and one-day-old baby boy down there, getting down to the ground and escaping to the winter hills – just to get away from that hideous, sterile, fascist institution."
Welcome to the machine. In walks the petitioner from juvenile court and a police officer, serving the new parents papers stating that they must appear in court two days later to face charges that they had an "intent to harm" their baby by resisting giving him AZT and by wanting to breast-feed.
"I got a little crazy at that point," recalls Kathleen. "I think I told that woman she was insane."
"That woman's demeanor was right out of a Kafka novel," says David, "like in The Castle, where the fellow is encountering the bureaucracy. She was really grim."
The SWAT team stayed in the room until the Tysons had agreed to their demands – AZT and no breast milk.
"At this point, I was just hysterical," Kathleen says. "I was hitting the buzzer and telling the nurses to bring the formula in and that we'd start then and there."
"They acted like they were going to take him, take Felix," David says.
Child welfare authorities had been contacted at that point, and they had already taken legal custody of Felix, in total violation of the CDC's own recommendations and on the strength of the one histrionic infectious-disease pediatrician.
But luckily, the Tysons were permitted to keep Felix in their care for the time being under close supervision of the state. Even though Kathleen had surrendered completely to their dictates for fear of losing her child, the nightmare was not over by a long shot. "It didn't matter," says Kathleen. "The wheels were already grinding."
Three days later, they all appeared in juvenile court, where the court had appointed an attorney for each of them: Kathleen, David, and baby Felix. "Yep, Felix has an attorney," says Kathleen with a wry chuckle.
They were ordered to administer AZT to Felix for six weeks and not breast-feed. A social worker visited their house on a regular basis to observe them giving Felix the AZT. Now the course of treatment is over, but the social worker still comes regularly. "He told us that Services for Children and Families doesn't like this case at all. They know we're good parents."
The Tysons have been deluged with support from around the country and around the world. AIDS dissidents, united recently by the Valerie Emerson case, jumped right into action to help them. Even though Felix has now tested negative for HIV, the Tysons' battle is not over.
"I'm still ordered not to breast-feed," Kathleen says. "I need to have the right to feed my son the way I see as best, and he needs to have the right to get his mother's milk."
The Tysons tried in vain to solicit help from various organizations, even the American Civil Liberties Union, but nobody would touch this.
Still, they have vowed not to give up fighting for the complex underlying principles of all this – not only freedom or parental rights but also medical sanity and scientific integrity. The Tysons' 10-year-old daughter (along with Kathleen herself) is another example of a case that adds strength to the argument against HIV as a fatal virus. Neither one, despite Kathleen's supposed long-term exposure to HIV, have been affected in the slightest. They are in perfect health. And Kathleen breast-fed her daughter for almost three years.
"I just look at my daughter, and I say 'You're wrong; you're wrong about this theory that HIV spreads through the breast milk.'"
Kathleen had her daughter tested for HIV antibodies – she was negative as is David. "It just continued to not make any sense," says Kathleen, "their whole take on it. When I went to the HIV Alliance... they always like to remind me... you shouldn't forget that you have the virus in your blood, and once you have that you're never OK. You never know when it's going to hit you. It's such a fatalistic attitude; it's no wonder people get sick from it."
The Tysons' nightmare is a familiar one in a futuristic society that has abandoned reason and even compassion in the all-consuming fight against a dubious retrovirus that thousands of AIDS patients don't even have. The difference between having rights and freedom and having none is the difference between shades of gray bands on an antibody test that is not particularly reliable. "What if his test comes back positive at four months?" Kathleen says. "We want to know that no one can force us again to give AZT to him, no matter what the outcome is. Felix is a vigorous, healthy, strong, beautiful baby."
"We are going to fight this thing," David promises, "tooth and nail."
Baby Felix gurgles into the phone.
© 1999 by Celia Farber
Originally published in Impression magazine