As a new reader of Mothering in 1977, I was especially interested in the letters about circumcision and vaccinations. In fact, one of the first things I did when I bought the magazine in 1980 was to arrange the letters under specific headings so that readers could more easily follow the ongoing dialogues.
As the editor of Mothering, I see circumcision and vaccination as two of many issues that fall under the broader umbrella of informed consent or freedom of conscience. Sometimes people will characterize the magazine as pro-homebirth or anti-vaccine because of our frequent coverage of these issues. In fact, we are pro-informed consent; we publish both sides of the story so that parents can be aware of all angles before they make a decision. It was in this spirit of informed consent that I first became interested in covering HIV and AIDS. In 1996, I received a letter from Michael Ellner of Health, Education, AIDS Liaison (HEAL) in New York City. Michael asked Mothering to look into the new recommendation that all mothers and newborns be tested for HIV. In the Summer 1997 issue of Mothering, I reported that universal HIV testing, like universal prenatal testing, is controversial because AIDS is rare among women of childbearing age and among newborns.
Not only is universal HIV testing for pregnant women and newborns controversial, but also are the medications prescribed for HIV and the recommendations regarding breastfeeding. Up until 1997, the World Health Organization (WHO) left the infant-feeding choice up to the HIV mother herself. By 1998, the recommendation had changed and WHO recommended safe alternatives to breastfeeding. As a retired La Leche League Leader, I was dismayed that breastfeeding was contraindicated in HIV because up until then, only one disease-untreated, active tuberculosis-contraindicated breastfeeding.
In September 1998, Mothering published the article, "AZT Roulette: The Impossible Choices Facing HIV-Positive Mothers." It is about the dilemma of women who test positive for HIV-but have no risk factors or symptoms of illness-and are coerced into taking drugs (such as AZT) that can cause premature birth, birth defects, cancer, and death. These women are accused of potentially risking the lives of their children when they question taking these drugs, and yet they are, in fact, actually risking the lives of their children when they do take them. One of the things that most concerned me in this article was the high rate of complications among babies whose mothers take AZT. In one study, for example, the rate of birth defects was 13 percent, nearly six times the normal rate. Another study was halted because of the high rate of premature births. If this weren’t bad enough, pregnancy is one of the conditions listed by the manufacturer of the HIV test that can result in a false positive for the virus.
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One of our readers whose life was dramatically affected by HIV is Kathleen Tyson, whose story appears in our May/June 1999 issue. In September 1998, Kathleen’s midwife called to ask her to come in to talk about her prenatal tests. She and her husband were worried as they drove to the midwife’s office, but they never expected it to be the HIV test. Kathleen had tested positive. As a vegetarian who danced, practiced yoga, and ran 10 to 16 miles a week, Kathleen felt she was in the best shape of her life. She was in a long-term monogamous relationship and had no risk factors for AIDS. Still she wanted to do the right thing, so she began taking AZT. Six weeks into the regimen, however, she stopped because she felt sick every time she took the drug and was worried about its effect on her baby. She planned to birth at home and to breastfeed, but two weeks before her baby’s due date, she had an emergency cesarean because of a prolapsed cord. After she awoke from the anesthesia, she nursed her son Felix. But before the day was out she was ordered by her pediatrician to stop breastfeeding and served a summons to appear in court two days later. There she was court-ordered to cease breastfeeding her newborn baby and to give him AZT every six hours around the clock for six weeks. The bitter irony of Kathleen’s experience is that the WHO recommendation regarding HIV and breastfeeding changed again because research since 1999 has shown that exclusive breastfeeding is actually a protection against HIV. The choices facing mothers who question mandatory medication for HIV are not unlike those faced by parents who choose to give birth at home in a country where 99 percent of births take place in the hospital, or parents who decide not to circumcise their son, even though the majority of their peers are doing so. These choices are not unlike those made by parents who wonder if they can delay childhood vaccines, select some but not all of them, or forego them altogether.
These parents exercise their freedom of conscience-a right supported by US courts for more than 100 years. Freedom of conscience is protected under the doctrine of informed consent, which specifically protects the right to decline. For informed consent to be valid, a decision must not be coerced.
Parents’ freedom of conscience has been demonized of late. A new book, Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure by Paul A. Offit, MD (Columbia University Press, 2008), patronizes suffering parents of autistic children and dismisses them as part of a hysterical conspiracy of alarmists. The tragic death of John Travolta and Kelly Preston’s son was cruelly sensationalized by suggestions that perhaps the Scientologist couple hadn’t done enough to care for their son, who, in fact, had 24/7 supervision. On October 28, 2008, in its fifth episode of the season, the television show Law & Order: Special Victims Unit vilified Christine Maggiore, one of the mothers featured in our September 1998 article, in which a daughter and mother both die of AIDS.
On January 8, 2009, the television show Private Practice aired an episode about a child who brings measles into a medical clinic and the widespread panic that ensues. Parents who don’t vaccinate are called child abusers and portrayed as pariahs. Measles is depicted as a life-threatening disease instead of the mild illness that my friends and I all had as children. In the Private Practice episode, the child dies from measles, an occurrence that is so rare that, based on the current incidence levels (42 in 2007), a death from measles would happen once every 119 years. Even if the incidence of measles were to quadruple, we would not see a death for 30 years. The current death rate from measles is 1 in 5,000, yet it is portrayed in the show as though it happens frequently.
In this episode, a doctor forcibly vaccinates the sick child’s brother for measles as his mother stands by protesting helplessly. While the actors who play the doctors in the show are all ridiculously good-looking and remarkably fit, the non-vaccinators appear dowdy and dangerous. One wears no makeup, is slightly overweight, and occasionally hysterical. The other is a sometimes drug addict who forgets to vaccinate.
The incidence of measles cases has risen dramatically from 2007 to 2008 and is at its highest level in more than a decade. According to the Centers for Disease Control and Prevention (CDC), 63 of the 131 new cases of measles from January to July 2008 were among those unvaccinated. The majority of the cases (68), however, were among those vaccinated. Interestingly, according to the CDC, 89 percent of the 131 new measles cases were "imported from or associated with importations from other countries, particularly countries in Europe, where several outbreaks are ongoing." In the face of this evidence, why is it the conscientious objectors who are scapegoated? The growing propaganda that unvaccinated kids put vaccinated kids at risk is not supported by the evidence and just doesn’t make sense as long as the vaccines themselves are effective.
Now even parents who sleep with their babies are being portrayed as dangerous kooks. On January 25, 2009, our local paper, the Santa Fe New Mexican, reprinted on the front page an article from the Washington Post titled, "Infant Deaths Rekindle Bed-share Debate." The article reports on a study to be published in the February 2009 issue of the journal Pediatrics, showing an increase in deaths attributed to accidental suffocation and strangulation in bed (ASSB) from 2.8 to 12.5 per 100,000 between 1984 and 2004.
While the Washington Post article suggests that this increase is due to more parents sleeping with their children in order to facilitate breasteeding, the research suggests otherwise. In the first place, black male infants in the study were disproportionately affected by accidental suffocation-and yet breastfeeding rates among African-American women are significantly lower than rates among other women. Secondly, the researchers themselves attribute the rise to several possible causes, one being the shift in classifying deaths that previously would have been attributed to Sudden Infant Death Syndrome (SIDS).
In 1996, the CDC began to classify SIDS deaths under the larger category Sudden Unexplained Infant Deaths (SUID), and added ASSB for the first time under this new category. According to the CDC, "CDC research has found that the decline in SIDS since 1999 can be explained by increasing SUID rates (e.g., deaths attributed to overlaying, suffocation, and wedging). This change in reporting or classification of SUID can be explained by changes in how investigations are conducted and how diagnoses of SUID are made. For example, more deaths may be attributed to accidental suffocation than to SIDS."
The Pediatrics research was based on epidemiological analysis of infant mortality data. Without a detailed death-scene investigation, an autopsy, and a review of the medical records, it is doubtful that infant deaths are correctly classified on death certificates. Even when there is an autopsy, it is impossible to tell the difference between a death from strangulation and a death from a physiological cause, such as a heart defect.
A dangerously vicious intolerance for parents’ freedom of conscience is growing and is breeding an atmosphere of distrust among families. It’s especially important now for parents to clearly differentiate between the personal and the political. If you exercise your freedom of conscience and make a decision that is held by only a small minority, be reassured by the knowledge that the Constitution of the United States was written specifically to protect minority opinions. If you have made a responsible and well-informed decision, you can dismiss the propaganda when an issue is demonized in the press, because its coverage may be influenced by political, that is, financial, motives. Parents are the only ones who will live with the consequences of their actions, so they must be the ones who make the final decisions. Anything else is tyranny.
This article originally appeared in Issue 152- January/February 2009 – of Mothering Magazine.