HIV-POSITIVE WOMEN ARE CHOOSING TO DELIVER
THEIR CHILDREN TO SAFETY - OUTSIDE THE SYSTEM.
By Susan Gerhard
If Dana had conceived her child just one month earlier, she might have had the birth experience of her dreams. As it turned out, she was living a nightmare, seated in a cramped office in a hospital being reminded by the Chief of Pediatric Immunology that if she decided to breastfeed her daughter, Nia, or decided not to follow any other of her doctors' recommendations -- he wanted to immediately give the girl a potent chemotherapy, AZT -- the doctor would report her for neglect, and Child Protective Services would take her two-day-old girl away.
A single mom, Dana asked if she could have a moment to 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 pyjamas, was given the ultimatum. She had not slept for three and one-half days.
One month earlier, New York began implementing a law that all newborn children of mothers whose status is not known must be tested, and Dana, a suburban New York working mother, got caught in the dragnet. Nine years earlier, she'd tested positive for HIV. But after years of being told by doctors told she was actually too healthy to medicate, she decided it must not have any bearing on her health...
Faced with the awful choice of following doctors' instructions she felt would cause immediate harm or lose her child altogether, Dana did what many HIV-positive mothers feel they have to do: She faked it. She left the cramped office where the gang of doctors read her the riot act, walked down the hallway to her room, and was greeted by the lactation consultant, who, apparently, hadn't gotten word of Dana's predicament. The consultant was there to assist Dana with breastfeeding, and Dana didn't see any reason why she shouldn't. She just pulled the curtain around her bed and went with it.
Many doctors feel they know the best course of action for pregnant women with HIV and they follow the US Public Health Service guidelines:
aggressive combinations of anti-HIV drugs during pregnancy, AZT
administered intravenously during labor, followed by formula-feeding and six weeks of AZT for positive and negative newborns alike. But they add their own codicil -- a call to Child Protective Services if the parent doesn't comply.
The only way to avoid Orwellian scenarios, many HIV-positive parents feel, is to go underground. They decline tests in the 48 states where it's still allowable, look for the rare midwife who will be open-minded to 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 only to breastfeed 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 by social services when she refused to treat them with AIDS drugs. Kathleen Tyson in Oregon, who was court-ordered not to breastfeed her new son, and the Camden, UK, family who had to flee the UK to avoid having their child tested for HIV.
Dana found out she didn't have to get tested, even if Nia did, by talking to an attorney from the HIV Law Project in Manhattan, which joins patient-advocate groups in opposing mandatory testing -- so she was able to avoid the routine AZT drip during delivery. To avoid raising suspicion, she allowed her child to be given three doses of AZT in the hospital, but she didn't give the child any medications at home. Instead of breastfeeding the new baby, and creating possibly easy-to-spot breastfeeding behaviors -- reaching for the nipple, or under the shirt, in public -- she pumped the milk and fed Nia through a bottle. And she didn't let on what she'd been doing when, two weeks later, her child's pediatrician reluctantly gave her the good news. Her child had no detectable HIV virus, as measured by a viral load test.
The medical professional admitted he hadn't wanted to tell her, because was worried she would stop giving her child the prescribed AZT. She didn¹t inform him that she already had.
If she were having another child, Dana says, she wouldn't 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..."
A sneak preview of the powerful article appearing in the September/October 2001 issue of Mothering Magazine.