SAFE AND SOUND UNDERGROUND
HIV-positive Women Birthing Outside the System

By Susan Gerhard

Mothering Sep./Oct. 2001

If Dana had conceived her child just one month earlier, she might have had the birth experience she had always imagined. Instead, she found herself in a cramped hospital office being informed by the Chief of Pediatric Immunology that if she decided to breastfeed her two-day-old daughter, Nia, or did not follow any other of her doctor's recommendations -- he wanted to immediately give Nia a potent cell-killer, AZT -- Dana would be reported for neglect, and her daughter could be taken away. Dana, a single mother, asked if she could call her family and get their advice, but the doctor told her that she had no time; she had to concede immediately or be turned over to the authorities. Three other doctors stood in the doorway in suits and lab coats as Dana, dressed only in her pajamas, was given the ultimatum. She had not slept for three and a half days.

One month earlier, New York State had begun implementing a new requirement in its mandatory newborn HIV testing laws. Results of the tests would have to come back within 48 hours so that the child could be treated, and the mother "advised," before they even left the hospital. Dana (not her real name) got caught in the dragnet. Nine years earlier she had tested positive for HIV. Doctors initially told her she had too many T cells to medicate, however, and she wondered whether her HIV result might have been an error. Dana had Epstein-Barr virus, which is known to create false positives on certain HIV tests.(1) She had remained healthy without medication, and she felt the HIV she supposedly carried might never actually make her sick. So she hadn't planned to reveal her HIV status to her doctors. But when she received a letter from the hospital informing her of changes in the law, she realized she would be one of its first targets.

Faced with the choice of either following instructions she felt would cause immediate harm to her baby or losing her child altogether, Dana did what many HIV-positive mothers feel they must do: she faked it. She agreed to follow the doctors' instructions. But when she walked down the hallway to her room, she was greeted by a lactation consultant, who apparently hadn't gotten word of Dana's predicament and was there to assist her with breastfeeding Nia. Dana didn't see any reason why she shouldn't. She just pulled the curtain around the bed and went with it.

When treating pregnant women who test positive for HIV, most physicians follow US Public Health Service guidelines, which include aggressive combinations of anti-HIV drugs during pregnancy and AZT administered intravenously during labor, followed by formula feeding and six weeks of AZT for newborns, whether or not they test positive.(2) But many doctors, like Dana's add their own codicil -- a call to Child Protective Services if the parent doesn't comply.

The only way to avoid such Orwellian scenarios, many HIV-positive parents feel, is to go underground. They decline tests in 48 states where that is still allowable, look for the rare midwife knowledgeable about the reasons why a person would test HIV-positive but still be healthy, buy the AZT their doctors prescribe and flush it down the toilet, and stock formula and bottles in their cabinets while breastfeeding on he sly. They want to avoid the fate of the defiant mothers whose stories haunt the internet and talk-show circuits -- Sophie Brassard in Montreal, whose two sons were taken away when she refused to treat them with AIDS drugs; Kathleen Tyson in Eugene, Oregon, who was court-ordered not to breastfeed her new son; and the Camden, UK, family who decided to flee the country to avoid having their child tested for HIV.(3)

Dana found out that she didn't have to get tested (although Nia did) by talking to a lawyer from the HIV Law Project in Manhattan, which joins patient-advocate groups in opposing mandatory testing. She was therefore able to avoid the routine AZT drip during delivery. To avoid raising suspicion, she allowed Nia to be given three doses of AZT in the hospital, but she didn't give her any medications at home. Instead of breastfeeding, which would create breastfeeding behaviors in her baby, such as reaching for the nipple or under the shirt in public, she pumped her milk and fed Nia through a bottle. She never changed her baby's diaper in a doctor's office, where the breastfeeding tell-all, the milky orange poop, would be noticed. And she didn't let on what she had been doing when, two weeks later, her pediatrician reluctantly gave her the good news: Nia had no detectable HIV virus. The doctor admitted he hadn't wanted to tell her, because he was worried she would stop giving Nia the prescribed AZT. She did not inform him that she had already done so.

If she were to have another child, Dana says, she would not give birth in a hospital. "When the pediatrician first came in to talk to me about my test results," she remembers, "I was in a room with three other women, and he was just discussing it in front of them." Later, the hospital ended up keeping Nia an extra day after Dana herself went home. "They said it was because of jaundice," Dana says. But she believes it was to ensure the child got her AZT dose. "If I had to do it again, I would want the baby in my physical control rather than theirs."

Safety in Numbers?

Just how sound is the advice these doctors are giving? Health professionals may not volunteer the information, but studies show that AZT, the drug that was pushed on two-day-old Nia, can be extremely damaging. AZT has been shown to cause cancer and fetal deformities in animals, and the FDA states that it should not be used unless the potential benefit to the fetus outweighs the potential risk.(4)

Studies of hundreds of children who received AZT find them in worse health than their HIV-positive but less-medicated counterparts. According to one study, children born to mothers who received AZT during pregnancy showed a much higher probability of getting sick and dying by age three than children born to mothers who did not take AZT.(5) Another study found that HIV-positive children who took AZT were three times more likely to develop AIDS or die by 18 months than those who did not.(6) And a 1999 Columbia University observational study that adjusted for the health of the mother found children receiving AZT 1.8 times more likely to get an AIDS-defining illness or die in their first year than their counterparts who did not get the drug.(7) Researchers have speculated that these results might depend on whether a child's "infection" occurred in utero or during delivery, but so far they have not come to an agreement.(8)

Even in the 1994 benchmark study that opened the floodgates for AZT use among pregnant women and their newborns showed that with no drug treatment at all, only 25 percent of the women passed HIV along to their babies.(9) Because the study, sponsored by AZT's manufacturer, showed that the drug reduced transmission from 25 percent to 8 percent, the drug has become standard treatment.(10) But what those numbers really mean is that only 17 out of 100 children are theoretically helped by AZT. That leaves 83 percent needlessly medicated, during the most fragile moments of their lives, with a drug whose "side effects" are so debilitating it's been rejected by members of every other treatment group.(11)

The consequences of breastfeeding, a taboo for HIV-positive mothers in the industrialized world, are no clearer. A study of 551 HIV-positive pregnant women presented last year at the XIII International AIDS Conference in Durban, South Africa, showed that, at six months, infants who were exclusively breastfed for three months or more were no more likely to get HIV from their mothers than those who were not given any mother's milk at all.(12) (See sidebar "Is Breast Still Best?")

Dana's daughter, Nia, is now two years old. She drank breastmilk for four months but is now weaned and healthy, and tests for the virus still come back "undetectable." Would she have been better off if she had been taken from her mother on the second day of her life and placed on a diet of formula and AZT with foster parents? As one researcher stated, "Put simply, from a fetal viewpoint, the risk of intervention needs to be less than the risk of...transmission."(13) Despite the dire predictions of the past 20 years, not every pregnant woman who is HIV-positive passes HIV along to her child, and not everyone with HIV goes on to get AIDS.(14)

In February 2001 the National Institutes of Health (NIH) issued new treatment guidelines for adults and adolescents, the gist of which was not "hit hard, hit early" but rather, wait.(15) NIH was worried about the toxicities of the new combination therapies, which were not curing patients as expected.(16) NIH did not, however, revise its thinking on pregnant women or newborns taking these same toxic meds. In January 2001 the Food and Drug Administration (FDA) issued a special warning to pregnant women taking nucleoside analogues ddI and d4T after three women died.(17) The same month, the Centers for Disease Control (CDC) announced that the popular HIV-pregnancy drug nevirapine can produce liver damage severe enough to require liver transplants. CDC recommends against the use of nevirapine for health professionals who get accidental needle sticks, but still continues to recommend it for fetuses.(18)

There seem to be plenty of legitimate reasons to question whatever today's "promising new therapy" is. Yet when parents are the ones asking the questions, doctors have threatened to have their children taken away. The CDC maintains that HIV testing should be voluntary, treatment decisions should be made with fully-informed consent, and a woman's decision to refuse treatment should not result in punitive actions or denial of care.(19) There are some parents who have had to go to court to win such basic rights, however.

It was the Maine Supreme Court that upheld Valerie Emerson's right to refuse to give AZT to her second child. Emerson's first child had died after using the medication, and both she and the judge felt that the research was conflicting enough that her second should be offered the chance to survive without it. Three years later, Emerson's unmedicated, HIV-positive son is healthy and has recovered from a learning disability once attributed to his HIV.(20)

Mandated to follow up on every accusation of potential child abuse or neglect, social service agencies don't fight those medical authorities who are determined to oppose all skeptics. All it takes, HIV-positive parents note with fear, is one anonymous phone call to transform their lives into a bureaucratic nightmare.

Christine Maggiore is the outspoken nucleus of a movement to help HIV-positive mothers who question medication. Author of the book "What If Everything You Thought You Knew About AIDS Was Wrong?" (published by the American Foundation for AIDS Alternatives), Maggiore runs the group Alive & Well AIDS Alternatives from her suburban Los Angeles home. She also founded a service called Mothers Opposing Mandatory Medicine (MOMM) to help guide other HIV-positive mothers through some of the major minefields.

But even Maggiore, armed with all the right information and contacts, received a phone call from a social worker that still chills her to the bone when she recounts it. An anonymous informant had told social services that Maggiore's son Charlie's life was in danger -- that he was malnourished and being exclusively breastfed past the age of two by his HIV-positive mother. Knowing she would need legal advice to counter the charges, Maggiore asked when the investigators would be coming by. The answer was, "Now." Maggiore managed to call a lawyer as well as her mother in the intervening minutes. She also had a backup plan involving a friend, car keys, a backyard fence, and some liquid assets, but was fortunate enough not to have to use it.

When the social worker arrived, recalls Maggiore, "I saw in her face that she was probably one of those people who goes into this kind of work for all the right reasons." The woman observed that Charlie was a happy, rosy-cheeked, active, and well-nourished boy, and she conscientiously followed up with Maggiore's pediatrician to find out that not only was Charlie eating solid foods, he had actually never even been sick in his two-plus years. Maggiore never heard from the agency again and assumes the episode is over. But she spent two weeks in hell worrying about it.

"We didn't know if we were going to stay in the country," she says. "Every time someone knocked on the door, it was like I had taken a diuretic." One day, some people with clipboards came to the house. Still in a general state of panic, Maggiore ran to get her son's shoes so they could leave if necessary, before realizing that the people at the door were her own volunteers coming to help with some paperwork.

The idyllic family portrait that Maggiore presented isn't an option for every woman. Maggiore knows she is lucky, particularly because she has helped so many women who aren't. (See sidebar "MOMM's Advice.") A New York woman lost her child for months simply because she sought a second opinion about whether to give drugs to the boy, who had alternately tested HIV-positive, -negative, and -indeterminate. Police took the boy and his HIV-negative sister away in squad cars, while health officials demanded that the mother, a registered nurse, get a psychiatric evaluation as well as an HIV test; long before the results came back, they recommended that she write up a will. Her family was reunited when attorneys were able to prove that indeed she was not crazy.(21)

Medical authorities do not even need an HIV test in hand to complicate children's lives. Pam Anderson, an Indiana woman, got caught up in one hospital's hysteria when she innocently took her son to the emergency room after he stepped on a nail. Asked by the doctor what happened, the five year old mistakenly said he'd stepped on a "needle," later explaining that it was "the kind you hammer in a board." But it was already too late. Child Protective Services (CPS) was called in, and the doctor, without even giving the boy a tetanus shot or knowing the results of his HIV test, began administering AZT. When the mother questioned the logic of all this, both in the hospital and during a follow-up appointment, squad cars with police dogs showed up at her home to take the child away. Anderson and her son were lucky enough to be away from home at that particular moment.

With legal help from the International Coalition for Medical Justice (ICMJ, an advocacy group that lost its funding last year), CPS backed down. But they warned that if Anderson's child tested positive for HIV within the next year, they would charge her with a felony: criminal intent to harm her child. Anderson told me she still does not know why the hospital jumped to such wild conclusions in the first place. But she wonders, "Is it because I'm black?" Says Anderson, whose method of payment at the hospital was Medicaid, and who herself tests negative, "I thought I was doing the right thing by taking him to get a tetanus shot."(22)

Policing the Breast

"The minute social services takes custody of a child," warns Deane Collie, former executive director of ICMJ, "it becomes impossible in court. The longer the due process, the harder it is to get the child back."(23) Collie noted that in some cases doctors have ordered psychological competency tests for parents who questioned treatment guidelines. If the parent is diagnosed with a psychiatric disorder, the authorities take over health decisions for the child.

Drastic measures are becoming more common, however. For those who helped pass New York's "Baby AIDS Law" five years ago, August 1, 1999 was supposed to mark another major victory. That was the date the state adjusted its mandatory newborn testing program so that all women entering hospitals in labor who hadn't previously been tested for HIV would be offered a quick and easy "rapid" HIV test. Results would have to be made available to all mothers and babies before they even left the hospital; that way, no children of HIV-positive mothers would fall through the cracks.

As it turned out, there was little to celebrate. In the first three months of the program, the period when Dana and her daughter Nia became involved, 24 percent of the positive rapid "Single-Use Diagnostic System" (SUDS) HIV tests collected by the state health department turned out to be false on second check.(24) Thirteen of the 17 newborns who received those inaccurate results needlessly started on toxic treatments of AZT and were not permitted to breastfeed while they waited days or weeks for HIV confirmation. One New York study showed a 67 percent false positive rate with the SUDS test.(25)

Even routine voluntary testing creates problems for non-risk groups. On the frightening end of the spectrum, researchers estimated in 1987 that an HIV test that was supposed to have a specificity of 99.8 percent and a sensitivity of 98.3 percent would come up with a whopping 85 percent false positive rate if applied to low-risk groups in premarital HIV screening.(26) Pregnancy itself can create false positive results on some tests.(27)

Kathleen Tyson is one woman whose life became bizarrely complicated by routine HIV testing. The Eugene, Oregon, resident does not know why she tested HIV-positive while she was pregnant with her second child in 1997. She doesn't even know why she allowed herself to be tested in the first place. She had absolutely no reason to worry about getting a sexually transmitted disease. She had been in a monogamous relationship with her husband for a decade. They had a nine-year-old daughter together, and two teenage stepdaughters. Tyson felt healthy; her hobbies included running, organic gardening, and hiking. But she was 38 when she became pregnant with Felix, and her midwives, who were affiliated with a hospital where the Tysons' insurance could cover the birth, convinced Tyson that, because of her age, she should take a variety of genetic and other tests. The HIV test just happened to be one of them.

Two weeks later, Tyson learned her child was fine but that she had tested positive for HIV. Her doctor told her that her viral load was so tiny that if she weren't pregnant, he wouldn't recommend any treatment at all. But since she was pregnant, it was deemed appropriate that she immediately begin taking a combination of drugs -- the safety of which in human pregnancy has not been determined -- so that she wouldn't transmit the virus to her baby. Many pregnant women have been afraid to pop so much as an aspirin since the thalidomide and DES tragedies. But Tyson immediately began taking her prescription of Combivir, whose components AZT and 3TC have caused fetal deformities and cancers in laboratory animals, and she was given the protease inhibitor nelfinavir, whose effects in human pregnancy have yet to be fully understood.(28)

Tyson took the drugs for six weeks until she was too sick and too disillusioned with her doctor to go on. She told her midwives of her decision to stop, and the hospital staff also went along with her birth plan -- no AZT during delivery and no AZT for the child afterward. No one gave her trouble over breastfeeding, until a pediatrician specializing in infectious diseases walked into the room and spotted a book, Peter Duesberg's "Inventing the AIDS Virus," and threatened to talk to the hospital's lawyers. Soon armed guards were standing in the hospital hallways as a police officer and petitioner from juvenile court delivered a summons. Tyson was being charged with threatening to harm her child. After the hearing, the boy would be legally turned over to the state. He would be allowed to stay with his family, but only under strict conditions: A social worker would visit weekly to watch Felix get his AZT and make sure no breastfeeding was happening on the premises.

It didn't matter that Tyson's husband tested negative, or that their daughter, whom Kathleen had nursed for three years, tested negative.(29) It didn't matter that Tyson's breastmilk tested negative, or even that Felix himself tested negative time after time. The judge was not aware of the South African study showing that exclusively breastfed children were no more likely to get HIV than their formula-fed counterparts.(30) He had decided that Tyson's breastfeeding would endanger her son's life.(31)

CNN and every other news outlet descended on the formerly quiet Tyson household. Kathleen's husband was an electrician; she had worked in a coffee house; now they were being turned into unwilling celebrities. Many people told them if they had had a religious rather than philosophical objection to AZT, they would not have had such a problem. In retrospect, Tyson says, "I would have engaged an independent midwife, had a home birth, and avoided the medical establishment like the plague. I would have done anything to avoid the conflict." The Tysons continued to argue in court for their right to question their doctors, but the straightforward approach didn't work out too well for them in the end. A full year after her son became a ward of the state, Tyson won full legal custody but was ordered to continue to follow doctors' orders.

Mandatory Medicine

Counterintuitive as it may be to generations raised on free speech and patients' rights, avoidance is actually the best way to dodge trouble with medical authorities over questions about children and HIV medication. When it's the state vs. the parent, you're not looking at a battle of equals. The state has the power to take custody of children; even when parents succeed in getting their children back, they end up paying legal fees and a huge emotional toll.

Mandated medicine is not limited to HIV, of course. In New York alone, three recent cases point to alarming directions in the law. Amika Phifer was put in foster care when her mother, Tina (who homeschooled the girl), sought a second opinion about treatment of her daughter's ulcerative colitis.(32) Parents of middle-school children who didn't want to vaccinate for hepatitis B were threatened with neglect charges by their local child welfare agency.(33) One judge actually ordered a boy's parents to give the child the controversial psychoactive drug Ritalin.(34)

Legal standards for removing a child vary from state to state, according to Hilary Billings, who's helped HIV-positive clients successfully contest doctors' orders. In Maine, where Valerie Emerson won the right not to medicate her child, Billings says the standard is whether or not the parent is neglectful. In Oregon, where Kathleen Tyson fought the law and lost, the standard is, roughly, "what is in the best interest of the child" -- meaning it just doesn't matter how much the parent knows or cares. Billings, who represented both women in court, says simply, "Don't take the tests. Just don't take them." He advises women to be specific when refusing to authorize HIV testing, so that nothing falls through the cracks.(35)

Currently only New York and Connecticut require tests, but more "Baby AIDS" laws are in the works, cautions Andrea Williams, public policy coordinator of the HIV Law Project. Williams notes that Alabama passed a bill last year allowing the state to test newborns for "sexually transmitted diseases," and Indiana allows HIV testing within 48 hours of birth if the physician feels a newborn is at risk and the mother's status is unknown.(36) Of course, doctors in any state can, without the consent of the parents, order a test on a newborn if they feel it is medically necessary.

Maggiore's Mothers Opposing Mandatory Medicine aims to help women avoid finding themselves in a position in which medical procedures are conducted on a child without the mother's consent. Her basic principles are discretion and circumvention. She counsels women to withdraw from conflicts with doctors, family, or even spouses over the issue of HIV while they look for sympathetic, alternative caretakers.

Southern schoolteacher Stacy (who does not want to use her real name) was lucky enough to hear from Maggiore in the first week after she got her HIV test results. Before the results came back, her obstetrician, whom she'd been seeing for the past eight years, told her that she had done everything "right," establishing her career and being married for several years before thinking of having a baby. "If every one of my patients did that," he told her, "this world would be a better place. All the children would be happy." But when Stacy tested positive for HIV, her doctor formed a completely different opinion of her and her decisions. Suddenly, she was "in denial."

"Of course," Stacy remembers, "I did the normal freaking out. I considered suicide. I considered abortion. I couldn't eat, I couldn't sleep. Then I started manifesting symptoms. I had sore lymph nodes within two days." She was scheduled to begin AZT treatment within a matter of weeks. Finally, however, she began questioning the test and found some literature that seconded her gut feeling. She got in touch with Michael Ellner of Health Education AIDS Liaison (HEAL), New York, who got her in touch with Christine Maggiore. Maggiore's advice would prove to be vital.

Stacy found an open-minded midwife. As it turned out, however, she wasn't able to deliver in the privacy of her home. Her child turned breech, with one foot, not two, pressed against her cervix. She would have to be delivered C-section, by a doctor, in the place she feared the most, a hospital. She had been nonconfrontational with her former doctor as she switched over to midwife care, telling him she was opting to use a medical professional more experienced with women in her situation. And she followed through in this second round of birth-plan changes with the same polite tactics. She didn't alert her new hospital's doctor to her HIV test, and they didn't question her. When they offered to test for HIV, she declined, and told the truth -- she'd already been tested. Her baby, the doctor declared when it was born, was the healthiest she had seen in a long time.

Stacy now uses a holistic MD and doesn't talk about that HIV test except with the closest of friends. Both her original doctor and the infectious disease specialist she was sent to have written to her and even called her husband at work to check up; they have been told everyone is doing just fine.

Maggiore advises women to avoid emergency rooms unless they have an actual emergency, because ER staffers are quick to involve social services in cases involving HIV. She reminds women that if they accept public benefits, government agencies can easily intervene if doctors' orders are not followed.

Colleen, who doesn't want to use her real name because she still fears the authorities, found this last piece of advice extremely difficult to follow. She'd been in abusive relationships, worked at low-paying jobs, and was planning on paying with Medicaid at the beginning of her pregnancy. But when the nurses at the hospital wanted her to get on medication before she even saw a doctor, she began doubting their advice. She felt healthy. By the time she started talking to a social worker about her situation, she said, she "felt like a bunny walking into a trap, with the door about to close up on me." She slid out of the system by telling her doctor she was moving to another town to be near her aunt and uncle. Colleen ended up having a safe homebirth and, though it was emotionally challenging, decided to live with her parents until she could get on her feet again financially, instead of relying on the federal government's Women, Infants, and Children (WIC) program for help.

Just the first step, finding that sympathetic physician or midwife, can be a soul-sapping experience for HIV-positive women. "I would get off the phone and cry," recalls Christine Maggiore. "I tried calling a naturopathic doctor I know; I called a clinic that helps lesbians artificially inseminate; they didn't even call me back." Others told her that they wanted her on treatment -- the "if you can't be responsible, we can't be responsible for you" model.

"It made me realize the tremendous pressure I was under to have a perfect baby. No matter what happened, if it wasn't absolutely perfect, it was going to be blamed on HIV. If it was the stress of going through this, it would have been blamed on HIV. My midwife ran all the tests and always expected them to come back with something wrong, which was a bummer." Christine's baby, now more than three years old, is ahead of his peers in just about every important category that can be measured.

A Bad Dream

Even HIV-positive women who follow doctors' orders aren't necessarily treated well by the healthcare system when it comes to pregnancy. Rebecca Denison is the founder and executive director of Women Organized to Respond to Life-Threatening Diseases (WORLD) and speaks frequently on patients' rights issues. Although she herself has remained healthy for years without taking anti-HIV drugs, she believes the short course of AZT she took late in pregnancy and the single dose of nevirapine before delivery helped her not give HIV to her twins, and she counsels other positives seeking treatment. She finds some doctors are very supportive and understanding of an HIV-positive woman's desire to get pregnant, but others, she's heard from women over the years, are not. "When a 41-year-old woman tries to get pregnant, people are concerned about Down Syndrome," she says, "but they don't push the woman into the realm of being a monster. Some HIV-positive women who choose to get pregnant get treated as though they're very unethical."(37)

Doctors rarely suggest abortion to a woman with the possibility of passing on a hereditary disease to her child, but such advice is not unusual when it comes to HIV. Add to that the stigma conveyed by a medical establishment convinced that women who don't seek treatment are trying to actually hurt -- they might even say "kill" -- their children, and you have some deep and lasting scars.

Still living in Eugene, Kathleen Tyson has to face, on a weekly basis, the townspeople who wanted to take her child away. She saw one of the state employees she had dealings with in a grocery store. The doctor who reported her in the first place lives in her neighborhood. She brought her daughter to the hospital where Felix was born for an appendectomy and crossed paths with one of the doctors who testified for the state. Tyson does considerable work to vent her anger in the privacy of her home and knows that her continued good health, and that of Felix (now two and a half years old), will be the final word in those disagreements.

"I believe the interference of the state caused Felix and me some difficulty in the beginning as far as bonding and attachment go," she says. "But I knew I had to fight that and make an extra effort to allow what should have been a very natural process to occur."

Dana, in contrast, filed a complaint against the doctor who tried to force AZT on her daughter. The response she got over the phone was that it was unfortunate she had been treated so harshly, but that such treatment is sometimes necessary in order to get parents to comply with treatment recommendations. Says Dana, "Someone should tell the department of health what 'recommendation' means."

Dana's daughter, Nia, had three "viral load" tests that came back undetectable, but that was not enough for her doctors. The hospital social worker would not leave Dana alone, calling her at work and sending a certified letter demanding that she bring her daughter in for follow-ups, even when Nia was under the care of another doctor. It was hospital policy to test nine times (at birth, two weeks, and one, two, three, six, nine, 12, and 18 months), though New York law only mandates newborn testing twice: once at birth and once before the age of six months, according to Andrea Williams. "It's funny," Dana says. "Now that it looks like I am done with all of this, I have more nightmares than when it was happening."

Other women who, like Sophie Brassard, have come up against the medical establishment and lost, might love to be able to have that nightmare, if they could wake up in the company of their children. Christine Maggiore says, "I don't know how the women I've known who have lost the custody of their children have lived through it. I don't know what part of yourself you have to shut down in order to live for the day when you'll get them back -- and I don't ever want to find out."

Susan Gerhard is a San Francisco-based mother, writer, and editor whose work has appeared in Salon.com, the San Francisco Bay Guardian, POZ, MAMM, and other media.

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MOMM'S ADVICE

The US Public Health Service's 2001 recommendations on the use of drugs in pregnant, HIV-infected women seem to be so open-minded: "The decision to use any antiretroviral drug during pregnancy should be made by the woman after discussing the known and unknown benefits and risks to her and her fetus with her healthcare provider." In reality, what happens to HIV-positive mothers who exercise their right to informed choice is much more complicated. Doctors don't generally reveal all the negatives outcomes of treatment as advised, and patients who don't agree with the standard of care can get slapped with "intent to harm" their children. When social service agencies are called in, treatment options become a matter of legal negotiating rather than personal choice. In extreme cases, children have been taken from their parents.

Christine Maggiore founded Mothers Opposing Mandatory Medicine (MOMM) to help women avoid such an ugly scenario. She has a confidential toll-free phone service; she connects questioning parents-to-be with healthy HIV-positive mothers who have chosen not to medicate; and she sends out packets of information that include the full version of the following boiled-down pieces of her advice:

1. If you are HIV-positive and want to have children, share the information only with trusted family members, friends, and a doctor who you know will support your decision to avoid HIV/AIDS drugs and interventions.

2. Don't apply for public benefits and don't accept them if they become available to you. Local, state, and federal agencies can impose the accepted standard of care and create custody battles when recommendations are not followed.

3. Make sure the doctor or midwife delivering your child is sympathetic with your choices and will not perform postnatal HIV testing without your consent. New York and Connecticut have mandatory newborn testing laws; in other states, having a supportive doctor or delivering in a birthing center or at home can take you out of the routine HIV-testing loop.

4. If you are currently seeing a doctor or other practitioner who does not sympathize with your medical choices, don't invite serious problems by disagreeing with him or her. Instead, tell the doctor you understand the recommendations, and phone the office later to say that you have found a specialist better suited to your needs.

5. Be aware of what your current or ex-partner accepts as true about HIV and AIDS. Keep in mind that disagreements over health choices between partners, particularly exes, can lead to intervention by public health agencies and custody problems.

6. Use hospital emergency rooms only for emergencies. HIV tests are frequently given to ER patients without their consent.

To receive the complete MOMM guidelines, "Six Steps HIV-Positive Mothers Can Take to Exercise Informed Choice and Avoid Legal Problems," call toll-free 1-877-804-4MOM. For additional information on MOMM, see www.informedmomm.com or e-mail Christine Maggiore at christine@aliveandwell.org.

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Notes

1. G. Ozanne and M. Fauvel, "Performance and Reliability of Five Commercial Enzyme-Linked Immunosorbant Assay Kits in Screening for Anti-Human Immunodeficiency Virus Antibody in High-Risk Subjects," Journal of Clinical Microbiology 26 (1988): 1496.

2. CDC (Centers for Disease Control), "Public Health Service Task Force Recommendations for Use of Antiretroviral Drugs in Pregnant HIV-1-Infected Women for Maternal Health and Interventions to Reduce Perinatal HIV-1 Transmission in the United States," (January 24, 2001): 15.

3. AP, "Judge Orders HIV Test for Baby," (September 3, 1999); Alyson Mead, "Sophie's Choice," Salon.com (December 8, 1999); CNN San Francisco reporter Don Knapp, "Oregon Mom Forced to Treat Baby for HIV," (February 18, 1999).

4. See Note 2, 3-5.

5. Centres of the Italian register for HIV Infection in Children, "Rapid Disease Progression in HIV-1 Perinatally Infected Children Born to Mothers Receiving Zidovudine Monotherapy During Pregnancy," AIDS 13 (1999): 927-933.

6. Ricardo S. De Souza, "Effect of Prenatal Zidovudine on Disease Progression in Perinatally HIV-1-Infected Infants." Journal of Acquired Immune Deficiency Syndromes 24 (2000): 154-161.

7. Louise Kuhn et al., "Disease Progression and Early Viral Dynamics in Human Immunodeficiency Virus-Infected Children Exposed to Zidovudine during Prenatal and Perinatal Periods," Journal of Infectious Diseases 182 (2000): 104-111.

8. Ibid.

9. Edward M. Connor et al., "Reduction of Maternal-Infant Transmission of Human Immunodeficiency Virus Type 1 with Zidovudine Treatment," New England Journal of Medicine 331, no. 18 (1994): 1173-1180.

10. See Note 2.

11. Note: AZT monotherapy is not the standard of care for infants over six weeks: US Public Health Service, "Guidelines for the Use of Antiretroviral Agents in Pediatric HIV Infections," (January 7, 2000): 13-14. See also Alberta Reappraising AIDS Society, "AZT: Unsafe at Any Dose?," www.aras.ab.ca/azt.html.

12. Anna Coutsoudis et al., "Method of Feeding and Transmission of HIV-1 from Mothers to Children by 15 Months of Age: Prospective Cohort Study from Durban, South Africa," AIDS 15 (2001): 379-387. The study was first published in The Lancet (August 7, 1999).

13. R. Kumar et al., "Zidovudine Use in Pregnancy: A Report on 104 Cases and the Occurrence of Birth Defects," Journal of Acquired Immune Deficiency Syndromes 7 (1994): 1034-1039.

14. Lawrence K. Altman, "AIDS: Long-Term Survivors," New York Times (January 24, 1995); Ellen McGarrahan, "The Living Daylights," San Francisco Weekly (April 24, 1996); Christine Maggiore, "What If Everything You Thought You Knew About AIDS Was Wrong?" revised (Studio City, CA: The American Foundation for AIDS Alternatives, 1999), 94-126.

15. Jay Levy, "The Big Question Now in Anti-HIV Therapy -- When?," San Francisco Chronicle (February 23, 2001): A25.

16. Ibid.

17. AP, "Combination of AIDS Drugs Deadly," (January 9, 2001).

18. New York Times wire service, "US Warns Doctors to Limit Use of Anti-AIDS Drug," San Francisco Chronicle (January 5, 2001): A8.

19. CDC, "US Public Health Service Recommendations for Human Immunodeficiency Virus Counseling and Voluntary Testing for Pregnant Women," (1995): 10. See also Note 2.

20. Patrick Rogers, Tom Duffy, and Mark Dagostino, "A Mother's Instinct," People (October 5, 1998). Personal follow-up interview by phone.

21. "Police Take Baby from Mother 'In Denial,'" www.aliveandwell.org.

22. Personal interview.

23. Personal interview.

24. Jamie Talan, "Newborns and AIDS: To Test or Not to test," Newsday (January 20, 2000).

25. Mayris P. Webber et al., "Pilot Study of Expedited HIV-1 Testing of Women in Labor at an Inner-City Hospital in New York City," American Journal of Perinatology 18, no. 1 (2001): 49-56.

26. P. D. Cleary et al., "Compulsory Premarital Screening for the Human Immunodeficiency Virus," Journal of the American Medical Association 258, no. 13 (1987): 1757-1762.

27. Max R. Proffitt and Belinda Yen-Lieberman, "Laboratory Diagnosis of Human Immunodeficiency Virus Infection," Infectious Disease Clinics of North America 7, no. 2 (June 1993): 203-219.

28. See Note 2.

29. Conversation with Kathleen Tyson; the evidence was not admitted in court. See also "In the Eye of the Storm," Mothering (May-June 1999): 68.

30. See Note 12.

31. George Kent, "Tested in Court: The Right to Breastfeed," "SCN News" (newsletter of the UN's Subcommittee on Nutrition) no. 18 (July 1999): 89-90.

32. Conversation with Tina Phifer.

33. Brian Doherty, "Doctor's Orders," Reason (February 2001).

34. Ibid.

35. Personal interview.

36. Personal interview.

37. Personal interview.