I DON'T THINK OF MYSELF as a leper. I refuse to feel guilty about having been an active soldier in the sexual revolution. But I have a venereal disease lurking in my body, probably around the base of my spine, known as herpes. I'm going to tell you about my experience with it -- about the chance my 3-month-old baby had to contact it and die -- because some 300,000 to 500,000 of you, American adults of child-bearing age, will get it in the next year.
Genital herpes already afflicts an estimated 5 million to 20 million adults in the United States. The range is wide because this disease, although increasingly common and of officially epidemic proportions, is not reportable to the federal Center for Disease Control. There is no known cure. And those medical researchers interested in a cure are not getting much help from the federal government.
Initially, herpes is transmitted from one person to another by contact with an open sore, much like a "cold sore" in the genital region. Symptoms can include burning and fewer, but infection isn't always accompanied by sumptoms readily identifiable as herpes. I didn't know I had it for some time. My first gynecologist here in Washington finally diagnosed it, but didn't warn me that it could pop up at anytime, that it was now "latent" in my body, probably forever. He also didn't know or bother to tell me that herpes could complicate any future pregnancy or that genital herpes has been implicated in increased risk of cervical cancer.
Toby and I had just recovered from a mild outbreak of sores last October when we discovered I was pregnant. My obstetrician for the pregnancy, Dr. Stanley Marinoff, had confirmed the herpes with a culture. During our first prenatal chat, he flatly told me we might not be able to avoid a Caesarean section, despite our strong desires for natural childbirth. His ground rules were that if I came up with a positive culture, visible sores or no, within a week or two of my due date, we'd have to set a date for surgery. The consequences of an undetected infection, transmitted during birth to our baby, Dr. Marinoff made clear, could be death or permanent damage. Determined to understand what we were up against, I began researching the matter myself.
For a disease that can have drastic effects, little information is readily available about genital herpes for the average parents-to-be. (Herpes viruses come in some 70 varieties, most noninfectious. Shingles, an extremely painful skin eruption, is an example of noninfectious herpes. Chicken pox is an example of an infectious herpes.)
Not that much medical guidance is available for physicians either. The most respected retrospective investigation of herpes and pregnancy, published by the American Journal of Obstetrics and Gynecology in 1971, showed that half of 398 infants infected by passage through a birth canal with active herpes died of complications.
Complications can include encephalitis (the virus invades the brain) and uncontrollable internal hemorrhaging. Of the other 199 babies, two-thirds suffered permanent brain or eye damage. The insidious aspect of all this is that half of the mothers involved had no symptoms of herpes infection at the onset of labor.
What this adds up to, in numbers, according to one Emory University study, is that one in 7,500 live births in the U.S. will result in babies with herpes infection. Comparatively, that's not very many, really. The American Social Health Association (ASHA) of Palo Alto (a private foundation that is to venereal disease what the American Cancer Society is to cancer) estimates that only 100 to 400 babies get infected during the birth process every year. A few may get infected and even ride it out, with some help from antibodies built up by the mother's body over time.
However, there is no proven cure for herpes, no sure-fire medical remedy for the millions who have it now and probably will experience reoccurences the rest of their lives -- no cure for the babies who might be exposed. As a result, unlike carriers of syphilis or gonorrhea, whose numbers can diminish if they seek help, carries of herpes become members of a stable and growing population pool.
The virus is hard to fight primarily because it is one of the "great biological enigmas of contemporary medicine," as private obstetrician and George Washington University associate professor John Grossman says.
Grossmen, who has spent nearly five years researching herpes virus for the National Institutes of Health, says no one knows what causes or stops a herpes virus. If the body decided to blow it out of itself, it would also destory a harmful number of healthy host cells in the nervous system. So the body reaches a compromise, Grossman explains in laymen's terms, and the virus stays in the body at a low level. Efforts to develop a cure have failed so far, Grossman believes, because they approach the problem with a decided lack of knowledge about the virus itself.
Dr. Herbert Blough of the University of Pennsylvania has developed a topical substance, 2-deoxy glucose, that appears promising, according to ASHA program director Carla Hines. Burroughs Wellcome Laboratories scientists in Research Triangle Park in North California are working on another substance labeled Acyclovir. But commercially, no wonder drug exists. Herpes for now must be a self-limiting disease, requiring some abstinence, such as limiting sexual activity and stress, Marinoff warned us.
So Toby and I abstained for a full two months before my due date -- from sex, from chocolate and nuts. I cut my workload and started taking two 500-milligram tablets of lysine a day: Researchers at the Lilly Research Laboratories in Indianapolis have found some hazy correlations between lysine and slowed growth of herpes in tissue cultures. Nuts and chocolate figure in because they contain high levels of arginine, which the same cultures indicated herpes viruses love to eat.
Toward by 30th week, I went to see Grossman to begin a series of herpes culture tests -- the prelude to finding out whether I was "clean" enough for a vaginal delivery. Finally, after having been very apprehensive, we felt we were getting a handle on the situation. Grossman has been conducting the tests with 100 percent success -- when cultures are positive in the last week or so of a pregnancy, he has generally performed C-sections. He hasn't lost a baby yet to herpes infection and "I don't want to," he says. "That's why I do what I do."
And he does it for free, as only one of two obstetricians in the metropolitan area who perform the series. Even NIH has denied him funding. He doesn't know why he has been turned down except that the whole research area of infectious disease incurred at the time of births is underfunded, he maintains.
Of a total $3.5 billion NIH budget for the year, only $7.5 million is directed toward research for all sexually transmitted dieases. $1.5 million is devoted to herpes, against billions for cancer and common annual levels of $250 million or so for diabetes.
ASHA has started mobilizing herpes carries across the country into a group called "HELP" to change this picture and to act as educators of other victims and physicians. About 40 HELP members threw their inhibitions to the wind last spring and met for a day of intense lobbying on Capitol Hill, trying to get congressmen and their staffers to drop what ASHA's Washington lobbyist, Wendy Wertheimer, sees as the unfortunate but traditional stigma attached to sexual disease.
But even confessions don't seem to be working, for now. A group of researchers, gathered at NIH to propose next year's budget, asked for $13 million for herpes virus. NIH's final report language calls for $2 million.
Under the care of two able physicians, Marioff and Grossman, I felt protected and clam for my own personal storm when suddenly, within one month of my due date, Toby showed lesions, I returned to Grossman for another test to be safe. I also tried to relax.
Before the test culture could show any results -- generally it takes 10 days to two weeks -- I went into labor quite unexpectedly, on the evening of May 16. Now I was truly frightened. What if the second test was positive? What if she was already infected? My labor began with the breaking of the protective amniotic fluid sac. Was it too late?
Of all the aspects of the disease I had researched, this, premature labor, was something I didn't know about. All the plans for surgery as a contingency, all the precautions, suddenly seemed useless. Grossman's statistics started running through my mind, but I stopped wondering where we'd fit in after the contractions started taking over, two to three minutes apart. Because my water had broken and the contractions were close, Dr. Marvin Rosenbaum, standing in for Dr. Marinoff, advised us to get to the hospital.
Once there, we told the chief nurse about our problem and tried unsuccessfully to reach Marinoff and Grossman for advice. I felt slightly reassured by the fact I had shown no symptoms recently. Also, just the day before, Marinoff had pronounced me a generally low-risk pregnancy, absent a herpes problem. But now the baby was coming and we didn't know if there was a difficulty.
The chief nurse asked gruffly if I'd had any symptons for the past five months. I was in no shape to count back that far, but I didn't think so. Because the baby seemed early, they hooked me into an IV and fetal monitor. The contractions grew and for me, dealing with them, the question of a possible herpes infection just floated away. The inevitability of the birth process took over.
In the end, after nine hours of labor, Dr. Rosenbaum determined that Jamie was stuck in my pelvis -- an unusual case of a "brow" presentation unrelated to herpes. We agreed to a C-section. I was prepped and a neonatologist was assigned to the operating room to handle any complications for the baby. At 9:02 a.m. she emerged, peach pink and squalling, a healthy, normal baby girl. We cried with joy and relief.
I was going to write that we were lucky. Ann Arvin, a pediatrician and medical researcher at the Stanford University Medical Center, advised me not to overemphasise luck -- no one really knows what the odds are. Because we followed a testing procedure through Grossman similar to one recommended by Arvin and HELP, we did about as much as we could. There "will always be people with your kind of experience. Most of the time, the cultures will have been negative," she says. If the culture had been positive, the baby might have shown signs of the disease, most often within two or three weeks of birth, she adds.
I look in on Jamie. I know she's long past the dangerous period. She'll remain safe from us and our disease as long as we take reasonable sanitary precautions. Meanwhile, we'll hope for something more reliable, like a cure.