Safe and Sound Underground: HIV-Positive Women Birthing Outside the System

By Susan Gerhard
Issue 108, September/October 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 chemotherapy, AZT--Dana would be reported for neglect, and her daughter could be taken away. **[AZT stands for azidothymidine. It is also called zidovudine by the manufacturer and marketed under the name Retrovir.] Dana, a single mother, asked if she could call her family and get their advice, but the doctor told her 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 her 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 the 48 states where that is still allowable, look for the rare midwife knowledgeable about the reasons a person might 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 the 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'd 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 didn't inform him that she already had 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 with 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'd want the baby in my physical control rather than theirs."