Commentary by Jill Cohen, midwife
On December 15, 1998 our local newspaper carried a front page news story about an HIV-positive mother who gave birth to a baby on December 7. Because she chose not to treat her child with AZT but also wanted to breastfeed him, the baby's pediatrician reported her to Social Services. A court order was issued for her to stop breastfeeding and for the baby to begin taking AZT. In addition, the state has taken legal custody of this child while he remains in physical custody of his parents. While there are few cases across the country of this caliber, it is notable that in similar cases the parents' choice not to treat with AZT, which the medical community admits is highly toxic, is most often based on religious convictions. This is not the case here, however. In fact these are well informed parents who have done much investigation on their own and are basing their decisions on medically based research and the discrepancies that are evident within that research.
There are two major issues at stake here. First is the issue of HIV, the effects of transference, the accuracy or inaccuracy of medical research vs. the parents' right to choose care for their child, and the effects of treatment vs, nontreatment in terms of side effects and quality of life. Second is the issue of how the medical and state officials tamper with the constitutional rights of parents in this society. Whose child is this? If the parents are sound, competent, caring parents (which these folks seem to be) are they not entitled to make informed choices regarding their child? And what of the tactics used to dissuade these parents from their choice--taking custody of their own child away with the claim that they are abusing him? Is it possible that what authorities are terming abuse is in fact a caring stance backed by information put forth to the public and read by these parents and supposedly by the very officials claiming abuse?
In its September/October issue, Mothering magazine published an article about the use of AZT in pregnancy and its use on newborns. It also includes compelling information about the inaccuracy of HIV testing and whether HIV in fact always causes AIDS. In terms of the Eugene, Oregon case, the Mothering article is enlightening. Society and its purveyors of public good tends to accept mainstream medical authority verbatim until its discrepancies are pointed out, often in debate with more nontraditional medical authorities who raise issues and ask questions. Meanwhile, where does this leave the parents, and in this case a newborn who gets swept up in the debate? If the parents are smart, conscientious and caring, they will do their research and inform themselves on all the options and effects of treatment. They will make the best and wisest choice taking into consideration all the facts available as well as their personal and family values. Why is doing one's best and standing by one's ethics so vastly disapproved of? Why is it not only challenged but disregarded to the extent that one's beloved child is subjected by law to questionable treatment, when the medical world has no idea how that treatment affects a person in the long run? What has happened to our basic family rights? And why is society at war with the right to question technology?
Interestingly, the same newspaper that published the story about the couple and their newborn ran a front-page story the next day on the proven efficacy of AZT on HIV transmission rates in newborns. The article mentioned Dr. Peter Duesberg, a professor of molecular biology at UC Berkeley who has consistently raised strong objections to standard research on HIV/AIDS, only in passing, failing to mention alternative viewpoints in anything but a dismissive tone. Is this the kind of research we want the public to continue to swallow--the status quo, no questions asked, only one side explained in detail as if it's a done deal?
Consider what happened with women who were given Thalidomide. Years after this drug was used--with faith in the medical community's assurances that it was safe--it was proven that it caused thousands of birth defects. And what about DES, a synthetic hormone used to prevent miscarriages? It was later proven to cause vaginal cancer in the daughters of the women who had taken the drug during pregnancy, a very long-term price to pay. After these catastrophes it became common understanding in the public and medical realms that the use of chemicals during pregnancy should be banned. But here we are again, taking the risk of making another major medical mistake at the cost of our children!
In the face of this controversy lie the individuals who are affected by the disease itself and by the disease of our cultural reactions. Prevailing medical stances don't always provide correct answers to how to deal with either one. We don't know everything there is to know about HIV, its effects on pregnancy, breastfeeding and infants. We don't know everything about AZT and its effects, either. But we have to remember that parents have a deep cellular, instinctual connection to their children. Their informed choices should be held in high regard and honored when true negligence and abuse have been ruled out. The Oregon couple and other families who have found themselves in the same or similar situations have been wronged by a system that claims to honor choice. When choice is not an option, what is left of our hopes and dreams? What is left of our freedom? What do we tell our children?
Reprinted from Midwifery Today E-News (Vol 1 Issue 8, Feb. 19, 1999)
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