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.)
Similarly, researchers at a Brazilian university published a study in the June issue of the Journal of Acquired Immune Deficiency Syndrome that concluded that HIV-positive infants exposed to AZT were five to six times as likely to develop full-blown AIDS as HIV-positive infants who were not exposed to AZT.
George Kent is chairman of the political science department at the University of Hawaii at Honolulu and works with United Nations task forces on nutrition and human rights. As an expert on the benefits of breast-feeding, he was called in to testify on the human rights implications of the Tyson case. Because he wasn't a medical doctor, he wasn't permitted to take the stand. In the testimony he wasn't allowed to give, Kent outlined a perspective that seems to strike a reasonable middle ground between parental autonomy and the state's interest in the lives of young citizens. "The state may not intervene simply because the parents are not following what the state deems to be optimum child rearing practices," he contends. "Similarly, the state may not intervene when there is no clear consensus regarding the effectiveness and risks of the proposed treatment….Governments may justifiably block individuals from making decisions in which their decision is certain to lead to an extremely bad outcome, such as death or severe injury." Kent notes that a study published last March in The Journal of the American Medical Association found similar mortality rates in breast- and formula-fed children of HIV-positive mothers.
Kathleen Tyson wanted to avoid feeding her child AZT, a powerful cell killer originally designed in 1964 for cancer chemotherapy but abandoned because it killed too many healthy cells as well. Yet she was forced to do so by state authorities.
At least one court has granted a parent the right to refuse anti-HIV drugs for her children. Valerie Emerson, who herself is HIV-positive, watched her daughter, who was taking anti-HIV drugs, die at age 4. As a result of the experience, she refused to give similar treatments to her then-4-year-old son, Nikolas. So the state of Maine tried to take custody of the boy and prescribe their preferred anti-AIDS drug regime.
A state district court in Maine, however, ruled against
the state, noting that doctors had given Emerson "all the information currently available from the limited experience the medical community has had in this treatment for children" and that they "could not give her any definitive information concerning long term effects….In effect, treatment is being provided to sufferers of this illness at the same time as statistics and efficacy studies are being conducted." Since the various treatment regimens were "changing constantly," the district court decided that Emerson should not lose custody of her son because she didn't want him to participate in what was essentially an experimental treatment plan. Maine's Supreme Court eventually upheld the judgement of the district court.
It's hardly surprising that HIV treatment is one of the hot areas of contention between parents and medical authorities. Not only does AIDS pose many serious and legitimate public health concerns, but it's far from clear what the best ways of treating it are. But legal conflicts between child services agents who are convinced they know best and parents who insist on their rights to raise their children as they see fit run the gamut. Representatives of local and state governments have enforced unwanted treatment plans or taken children away from parents in cases involving conditions ranging from hyperactivity to obesity to hepatitis B to ulcerative colitis.
In August, Albuquerque's Children, Youth, and Families Department took a 3-year-old away from her parents because the state decided she was too fat. In October a state district court judge announced an agreement to eventually return the child but cloaked the details under a gag order. (New Mexico news organizations, in concert with the Associated Press, challenged the gag order, but the New Mexico Supreme Court upheld it.) In October in Utica, New York, the parents of 77 middle school kids were threatened with neglect charges by local child protection agencies if they didn't get their kids vaccinated for hepatitis B, a disease almost always spread through intravenous drug use or sex with multiple partners. Vaccines themselves pose possible, if rare, health risks that some parents wanted to avoid.
In July a family court judge in Albany County, New York, ordered Michael and Jill Carroll to continue feeding Ritalin, a popular drug used to treat hyperactivity and other juvenile behavior problems, to their son Kyle. The Carrolls had taken Kyle off the drug because they were unhappy with its effects. They ended up in court after a school counselor reported them to the local child protective services agency for neglect.
"Ritalin solved the problem for the school," says Jill Carroll, "but the side effects were too much. Kyle hardly slept or ate. After a while he started complaining of-this was kind of weird -these pains. There was something wrong with his legs, he'd say: He had 'wigglies' in his leg. Every time he drank water, he said, it felt like it was 'trickling' from his brain." Kyle's insomnia and loss of appetite are not uncommon among kids on Ritalin. Other reported side effects include heart palpitations, nausea, anxiety, and psychoses. And the side effects can often lead to a roller coaster of psychoactive medications as new
drugs are prescribed to cope with them.
Government agents seem quick to drug kids. The Los Angeles Times ran a story in 1998 looking at kids in foster care and other forms of government supervision in California. Reporter Tracy Weber found that "children under state protection in California group and foster homes are being drugged with potent, dangerous psychiatric medications, at times just to keep them obedient and docile for their overburdened caretakers."
Ritalin, like AZT, is embroiled in scientific and cultural controversy, with a dominant medical model being combated by an increasingly vocal minority of doctors who point out Ritalin's chemical and functional similarity to cocaine and amphetamine (normally considered bad for kids). Skeptics also note that the disease for which it is allegedly a cure, "attention deficit hyperactivity disorder," is better recognized as a set of behaviors that teachers find irritating, with no objectively verifiable chemical or organic cause.
Physicians and psychologists who publicly oppose dosing kids with Ritalin, such as Peter Breggin, Fred Baughman, and Richard De Grandpre, all report hearing from many distraught parents who, like the Carrolls, are upset about what the drug does to their children. Such parents commonly report implied pressure from schools to drug their child lest the kid be booted from school. Thus, schools can leverage coercive power without openly bringing in child protective services or the courts.
Facing a court order to continue drugging their son, the Carrolls found another pediatrician, who decided Kyle didn't need Ritalin after all. Since it was a doctor's decision and not theirs, this satisfied the court order (and shed some light on the scientific value of Ritalin diagnoses). Kyle is now off Ritalin, and is in a special education school instead of the traditional public one that called in the cops. He's doing fine, says his mother. Still, the state insists it must drop in from time to time. "The only thing they do is still come out and make sure everything is all right," she tells me. "Every other week, they come in and say, 'Hi, Kyle.' Kyle says 'hi,' and they walk away."
As the Carroll's experience shows, the state doesn't like to step out once it has a foot in your life. This is a lesson also learned by Tina Phifer, a New York City accountant and single mother who homeschooled her daughter, Amkia. In 1997, Phifer brought Amkia, then 9, to Montefiore Medical Center for her ongoing problems with ulcerative colitis, an inflammatory disease of the colon usually characterized by bloody diarrhea and abdominal pain. Phifer is interested in non-Western medicine and kept an especially close eye on the drug treatments Amkia received. Phifer was alarmed when she heard doctors discussing taking out Amkia's colon because her bleeding stool problems were not going away despite all the drugs.
"Not only weren't they paying attention to me, the treatment itself was incompetent in terms of things like blood drawings," says Phifer. "They had student interns who couldn't find veins and would stick her four times and damage her arms. I told them that she'd had allergic reactions to the antibiotic amoxicillin in the past, and they still gave it to her." One of the drugs Phifer questioned was Rowasa. The Food and Drug Administration declared that the drug's promotional materials illegally and mistakenly implied "that Rowasa is effective in all types of ulcerative colitis…when such has not been demonstrated by substantial evidence." A batch of the drug was later recalled by its maker for production flaws. Which doesn't mean that Tina Phifer knew more about medicine or science than the doctors at Montefiore. But it does indicate that just being a medical doctor doesn't bestow flawless discernment such that the law should force your decisions on parents.
Dissatisfied with her daughter's course of treatment, Phifer tried to take Amkia out of Montefiore in order, she says, to find her a more compatible doctor. Montefiore officials responded by calling in New York City's Administration for Children's Services. ACS officials decided that Phifer's attempt to seek a second opinion constituted a failure to provide appropriate medical care, punishable by loss of custody. Young Amkia was taken away from her mother and spent two years in a series of foster homes.
I spoke to Amkia, now 12, by phone in August. Foster "homes" was a misnomer, the intense and articulate Amkia says. "I don't refer to them as homes: they were foster houses. I don't feel any of the foster people were warm or nice, in terms of their being any sort of rapport between the foster person and me. Many of them had rats and roaches and mice. Basically, all of the foster people were just in it for the money."
Amkia was moved to six different homes in the two years, rarely being told why she was moved. She was allowed to see her mother for only one hour a week in supervised meetings. A social worker sat next to the mother and daughter, ordering them to speak up so she could hear every sentimental word they exchanged. Amkia, formerly homeschooled, was enrolled in public schools where, she says, she was frequently picked on and beaten up. "I learned more when my mother homeschooled me," Amkia says. "I never got a chance to have my mind stimulated [in the schools]." Her homeschooling became an issue in family court hearings about custody; Phifer was accused of "educational neglect" for not sending her daughter to New York City public schools.
After you talk to Amkia, the law's presumption that this bright and aware human being should not be able to decide for herself where she wanted to live seems especially absurd. But she was not allowed to speak for herself in family court hearings. She had an assigned law guardian who, Amkia says, "never expressed my views, never told the judge that Amkia stated she wants to go home."
During her two years in familial exile, Amkia's ulcerative colitis, a condition that may be aggravated by stress, continued to act up. In May, after two years of fighting in family court, Amkia was allowed to live with her mother again on a trial basis, with biweekly visits from child protection authorities. Under her mother's care, Amkia is receiving Imuran, an immunosuppressive drug that often mitigates the symptoms of colitis, a mysterious disease for which there is a wide range of possible remedies, none of them surefire, and no cure. Because of what she considers unfair treatment by both Montefiore and state authorities, Phifer has filed lawsuits against them both.
Robert Beard was the general counsel for the International Coalition for Medical Justice, the group that represented Pam Anderson in her battles with the Terre Haute CPS and helped her maintain custody of her son Anthony. He also worked in state departments of social services for 15 years. "We run into problems when public health decisions are made in a political climate," he tells me. "People might not necessarily trust government, but they do tend to trust medicine. It's something in government social service work that we all need to be on the alert for. It's too easy to think that we know everything that needs to be known because we are the state and we're right."
It's impossible to know with any precision how often state or medical authorities step in to deny parental rights to make medical decisions for their children. The defunct ICMJ was the only national organization specifically dedicated to the issue. But more and more cases seem to be piling up. Former ICMJ board member David Rasnick, a retired pharmaceutical drug developer, says that he hears about cases all the time. He says "it's usually poor parents who are maybe used to thinking they have to do what doctors tell them, and don't have the resources to fight anyway." But as the stories recounted here suggest, it seems that even poor or socially marginalized parents are finding the will to fight back.
Fifty years ago, would a single black mother like Pam Anderson have had any support, much less the nerve, to stand up to the doctors, social workers, and cops who wanted her son to take a potential poison because of their assumptions about blacks and drugs? The arrogance of doctors can be hard enough to fight; when they can call in state agents, it gets even harder.
It's not easy to pinpoint one reason why these cases of parents fighting the medical state are happening more frequently, but one thread common to all these stories is information. Kathleen Tyson was familiar with arguments against AZT through the Internet; Pam Anderson's aunt was familiar with ICMJ through something she'd seen on TV; the Carrolls were strengthened in their objections to Ritalin when early local news accounts of their troubles brought phone calls from other parents. The more a citizen is able to know and learn, the more likely it is that he or she will have the will to argue with authority. Fortunately, information is increasingly decentralized and accessible, from hundreds of cable channels to thousands of specialty magazines to the cornucopia of the Internet.
And when someone's kids are involved, the motivation to fight back is especially strong. "I've met these mothers, and one thing I'd never want to do is come between a mother and her child," Rasnick says. "They want what's best for their kids, and they initially assume that a doctor is going to give them the best advice and do what's best for the kids. But if they see the kids getting worse instead of better, or they think what the doctor wants could be dangerous, they'll do whatever they have to that they think is best for their children."
