Doctor's Orders

Parents battle medical authorities for control of their children.

For uncertainty about a nail, a child was nearly lost. Last February, 5-year-old Anthony Mitchell and his big brother Dwayne were visiting their dad in Indianapolis. While dashing around playing cops and robbers with his brother, Anthony accidentally stepped on a nail protruding from a bunk bed leaning against a wall. The nail pierced his foot, causing a little bleeding and some lingering pain. When Anthony's mom, Pam Anderson, picked the boys up to take them back home to Terre Haute, about 50 miles away, she thought the injury probably wasn't that big a deal. She decided that if Anthony was still hurting by the time they got home, she'd take him to the hospital there. A doctor could make sure that no piece of anything had broken off, and a tetanus shot might not be a bad idea.

When they got home, Anthony was still complaining of some foot pain, so Anderson took her son to the emergency room at Terre Haute's Union Hospital. She assumed that if they didn't find anything in his foot, they'd bandage him up and send him home. But Anthony, as kids are prone to do, got his words a little mixed up. A doctor heard him saying something about stepping on "a needle" at his dad's. Anderson overheard a doctor say something about calling Child Protective Services (CPS). Worried, she called in her mother, Pamela Taliaferro. Anthony's grandma came to the hospital and, in front of a doctor, asked Anthony, "Now, what happened back at your papa's?"

"I stepped on a needle, Granny-you know, the kind of needle you hammer in a board."

While they were waiting for CPS to show up at the hospital, a doctor called Anthony's dad and asked him what had happened to his son. Dwayne Mitchell told them his son had stepped on a nail. "When the doctor hung up the phone with Anthony's dad," Anderson recalls, "I heard him say pretty loudly, 'Fuck!' He already had called in CPS, and now he was realizing there wasn't any reason for it. I know what they were thinking. They instantly make the leap: black-needle-drugs-AIDS."

Anderson's hunch proved correct. The hospital had already given Anthony a dose of AZT, the DNA-chain terminator widely prescribed as an anti-AIDS drug. Terre Haute CPS agents arrived and, despite a statement from Anthony's older brother that corroborated the nail story, decided that the doctor had done the right thing, and that Anthony should keep taking AZT just in case the boy had stepped on an AIDS-infected needle. The agents then sent Anderson and Anthony home with two bottles of AZT pills, with instructions to give the drug to Anthony and see a doctor at a clinic in a few days for a check-up. CPS agents warned her that if she didn't bring Anthony back to the doctor, they might have to come take Anthony away from her. For his protection.

"I took Anthony to the clinic," Anderson says. "The receptionist said the doctor couldn't see me right then. I said, 'I'm not leaving until he sees me. They told me they'd take my son from me if he didn't see Anthony.' She tells me I'll have to wait two hours. I waited. What else could I do? The doctor finally comes in and asks how Anthony is doing on the medicine. I said 'I'm not giving him AZT.' For what? He didn't step on a needle. They didn't even check him for tetanus, they were so sure about this AZT nonsense. The doctor said, 'Ma'am, there's nothing I can do for you since you aren't giving him AZT.' I put Anthony's socks on and left. My mom's house was five minutes away. By the time I got to mom's house, the CPS had already called her. I got on the phone with them, and my mom thought of something clever to tell them-tell them that the reason we weren't giving Anthony the medicine is because he can't take pills since he's only 5 years old."

That didn't settle the matter. Anderson was told a doctor could FedEx her liquid AZT. When she continued to demur about giving the drug to her son, CPS officials decided they'd had enough of her insubordination and went after Anthony. They sent over police squad cars and special police dog units, blocking the front and back doors of the house where Anderson lived with her sons. (Though CPS refused to talk with me for this story, Terre Haute police confirm that it is standard procedure to send armed police as backup in CPS custody cases.) Luckily, Anderson and Anthony weren't home when the cops showed up. But a cousin who witnessed the raid warned Anderson, who then realized she was in more trouble than she had thought.

Anthony's aunt had heard about an organization called the International Coalition for Medical Justice. ICMJ was a nonprofit legal advocacy group formed in 1999 to provide legal and financial aid to people who think their liberties are being violated in the name of medical treatment. Before closing its doors due to a lack of funds last September, ICMJ gave legal aid or advice in dozens of cases where a government authority had tried to override parents' decisions about proper medical care for their children.

Pam Anderson got in touch with Deane Collie, ICMJ's executive director. Collie recalls that once she began making phone calls on Anderson's behalf and let it be known she had legal counsel on her side, CPS agreed to drop the case. But it warned that if Anthony were to come back with a positive HIV test within the next 12 months, Anderson would be charged with felony criminal intent to harm.

The conflict between a parent's wishes and the state's notions of how to protect children's health has traditionally been fought on religious grounds, often through cases involving Christian Science or other sects that reject standard medical care. But in a largely secular contemporary America, such conflicts increasingly go beyond religion. (ICMJ deliberately avoided religious cases.) Parents caught up in heated scientific and ethical debates are finding themselves threatened with loss of their children, or what amounts to nearly the same thing, loss of legal control of their children. Fortunately, in a world of increasing access to information-and one in which authorities of all sorts hold less clout than they used to-many parents are fighting back.

Kathleen Tyson is another mother who ran afoul of the law because she didn't agree with government officials' medical prescriptions for her child. Tyson wanted to breast-feed her second child, Felix, who was born in 1998. That isn't normally a controversial decision.

In Tyson's case, however, it became one. Tyson is HIV-positive, though to date she has shown no signs of illness. (Her husband and older child, a daughter, both test negative for HIV.) When she expressed her desire to breast-feed Felix to the staff of Sacred Heart Medical Center in Eugene, Oregon, the cops were called in to help change her mind.

"Someone from juvenile court showed up with Eugene police officers, in full dress with guns, to serve us papers," Tyson recalls. "They asked if I intended to follow the doctor's orders not to breast-feed Felix. I said no, and the woman from juvenile court gave us papers saying we had to appear in court and were being charged with intent to harm, and that Felix was no longer in my legal custody." This was within 48 hours of her son's birth. "I thought if they took him away from me, I'd just die," she says, her voice cracking.

A judge ordered Tyson to give her son AZT for six weeks and to refrain from breast-feeding him. (Felix never tested positive for HIV himself.) A county nurse and a caseworker from Eugene's Services to Children and Families showed up every week to make sure she was giving her baby the AZT. They would also watch Felix and Tyson, looking for telltale signs, such as the infant's reaching for her breasts, that might indicate she'd been illicitly breast-feeding him. During court proceedings challenging the child protection agency's dictates, Tyson turned in lab results showing that her breast milk tested negative for HIV. The judge would not allow that evidence in the hearing, claiming that the scientific principle that breast milk might contain HIV was settled. The judge decided that the state did have an interest in continuing to forbid Tyson from breast-feeding her son. Tyson's caseworker asked her to not talk about the case with the press, a command she feels free to ignore now that the state has returned full legal custody to her. That happened in December 1999, after Felix was past breast-feeding age. She still worries about harm she might have done her son by giving him AZT.

Indeed, although officials at Eugene's Services to Children and Families were certain they knew best-and had their treatment regimen enforced by the courts-the proper treatment for infants exposed to HIV is a matter of much controversy. The original preferred treatment was AZT. But a study headed by Louise Kuhn of Columbia University, reported in the July issue of the Journal of Infectious Diseases, found that AZT exposure was associated with increased risk of death among infants. She and her colleagues looked at 325 HIV-positive infants and found that 44 percent who received AZT developed AIDS or died before reaching their first birthday, while only 24 percent of those not exposed to AZT died. (Kuhn also found that more-current multidrug therapies managed to avoid death by age 1 in all the kids, whether they had been exposed to AZT or not. Drug therapy skeptics wonder what will happen to these kids as they get older. The current state of scientific knowledge can't answer that question adequately.)

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