World AIDS Day: Remembrance of My First Patient with HIV
About a week before I was to finish my residency in OB/GYN and start a fellowship in Maternal-Fetal Medicine, the Dean of Admissions at Duke University School of Medicine, Dr. Art Christakos, who also happened to be a senior member of our department, took me aside to ask a “personal favor.” Since I was going to be staying on as a faculty member, he was wondering if I would consider taking on a “special case.” The daughter of a fairly well-to-do family in town, with whom he was close personal friends, had left home and taken off to see the world for several years without leaving a trace. Apparently, she had relied on her feminine wiles to support herself with regard to a basic place to sleep, eat, and supply the heroin to which she eventually became addicted as she traveled around the country. She had finally come home, begun counseling, gotten started on methadone, and then become pregnant. Although she was living with her parents again, ongoing supervision on the methadone program required her care to be received at the local health department, and Dr. Christakos thought she would benefit from having a physician she could call her own. He had actually been asked to see her himself, but thought her social situation, and the relationship he had with the family would interfere with her care. Besides, he hadn’t practiced obstetrics in years.
I met this young woman on a hot summer day in July. The air-conditioning in the health department did not work very well and the place smelled like...like a health department. When I walked in the room to meet her, I was taken aback. Sitting in front of me was a stunningly beautiful and healthy-appearing young woman. Not what I expected, but very easy to understand how she had supported a very expensive heroin habit over the years. We reviewed her medical history and the events of the past several years about which she was quite open. Her only complaints were about “feeling tired all the time” (preceding the pregnancy), a chronic cough (“I smoke 2-3 packs of cigarettes per day”) that frequently had required antibiotics over the past year for “bronchitis,” intermittent "night sweats," and a “swelling in her neck.” Physical exam was remarkable for not just a “swelling in her neck,” but a diffuse prominent lymphadenopathy, an enlarged spleen, and oral and vaginal yeast infections. She had been told that she kept getting the latter because of the frequent need for antibiotics to treat her “bronchitis.”
In addition to the routine pregnancy laboratory work, I screened her for TB, sent off serologic studies for cytomegalovirus and Epstein-Barr virus, and did an antinuclear antibody test as a preliminary screen for an autoimmune disease. Her CBC came back with a low total white blood count and very low lymphocyte count. She did not have acute mononucleosis and she had prior immunity to cytomegalovirus. The ANA was also negative as was her test for TB. Somewhere along the line we got a hematological consultation and a lymph node biopsy, neither of which led clarity to the diagnosis, but did rule out malignancy. Now, I know all of you reading this today wonder what the hell I was doing because you knew her diagnosis the minute I started this post, but things were not so clear back then, so stick with me on this just a little longer!
I headed off to the library to dig out what I could about her combination of physical findings, laboratory results, and somatic complaints. What I came upon were a couple of recent reports from the CDC describing similar findings in homosexual males in San Francisco and New York who ended up dying with Pneumocystis carinii, a condition that had only been seen with any regularity before in patients with severe inherited or malignancy-associated immunodeficiency syndromes, or who required immunosuppressive therapy for a variety of conditions. Indeed, these young males were labeled by the CDC as having some sort of “acquired immunodeficiency” although at the time the etiology for this was completely unknown. Could this be an autoimmune consequence of their sexual promiscuity, a toxic effect of the IV drugs (or contaminants) they had used, or perhaps an infection with some previously unknown organism?
Regardless, I went back to our young pregnant woman and told her that I thought I knew what she had, but I still had no idea what it was! Nor did I know what effect her condition might potentially have on her baby. She let me confirm my suspicion by sending off lymphocyte subtype analysis that confirmed the presence of very low T4 cells, a finding that had also been described in the men with “acquired immunodeficiency.”
As things turned out, she had a relatively uncomplicated pregnancy, except for chronic yeast infections and bronchitis. She delivered at term, a healthy, and large, baby boy, who had no apparent medical problems at the time (and never developed any afterwards). Sometime near the end of her pregnancy, a possible connection between infection with a virus that could grow in T lymphocytes and the cases of acquired immunodeficiency was raised in scientific circles. I told her of this association, but at the time, there was no readily available test that could be done to establish the diagnosis and investigators were still not certain that this was the actual cause of the immunodeficiency syndrome. However, my graduate training in viral immunology made me suspect that they were right on the money.
About a year after her delivery, she returned, complaining of weight loss, increasing fatigue, and persistent yeast infections. By that time, a very clear association between what is now known as human immunodeficiency virus (HIV) and the “acquired immunodeficiency syndrome” had been established. I told her again that I really thought that this was her problem, even if she wasn’t a homosexual male, and that we should confirm the diagnosis so that she could take advantage of any therapy that might someday come along to treat the condition. I also told her that at that time, we did not have a lot of information about potential transmissibility to babies in the uterus and cautioned her about getting pregnant again before we had a diagnosis. To my surprise, she REFUSED to be tested. She also refused to tell her partner what I was thinking. And, two months later, she showed up on my door step again, now early pregnant with her second child! She admitted that she did this quite intentionally and I could have strangled her…(not).
By now, she was really feeling awful, between the pregnancy and her medical condition, and I recommended that she be seen by a close friend of mine in infectious disease. He finally convinced her to be tested for the virus and it did not take long to confirm the diagnosis of HIV. She blew the ELISA off the wall. AZT was in clinical trials by that time (bless you Burroughs-Wellcome), but had not yet been approved by the FDA, so we really had no treatment to offer her. Despite that, with aggressive management of her respiratory and yeast infections, she did surprisingly well as the pregnancy progressed, again delivering a healthy baby boy at term who also, fortunately, did not have any evidence of the virus infection.
After delivery, she continued to be seen by the folks in infectious disease and was eventually begun on AZT. I would only see her periodically as our paths crossed in the hospital when she returned for follow-up visits. She always reported that the boys were doing well and that she felt better now than she had in years. She took my advice regarding contraception, motivated by the published reports of the high morbidity associated with intrauterine fetal infection with HIV, and her awareness of having rolled the dice twice and come away with two beautiful babies.
By that time, my experience with her and the pregnancies, and my own interest in viral infections, had motivated me to include the topic of HIV infection in pregnancy as a regular offering when I was invited to speak. I still have the 100’s of 35mm slides I put together more than 20 years ago sitting in a carousel in my office. Many have faded beyond recognition of their content. A portion of the talk, however, even back then, included a plea that all pregnant women should be encouraged to undergo HIV screening so that treatment could be initiated for both their benefit and that of their unborn babies.
When I finally left Duke in 1987, to move on to the University of Tennessee, I hadn’t seen our patient in several years, but I was updated periodically as to her ongoing condition by my friends in infectious disease. After arriving in Knoxville, I got so wrapped up in my work that I lost touch even with them. I did not, however, forget our patient and made a point of including her story with every opportunity I had to speak about HIV in pregnancy.
Then, around 1994, I was invited to present a symposium on sexually transmitted diseases to the high school students at the preeminent private school in Knoxville. It was to be a “no holds barred” sort of presentation, and I again decided to include the details of my experience with this patient. The day I was to give the talk, I thought it would have an even greater impact if I could give them recent information about her status. The folks I contacted in Durham told me that she had finally died from AIDS and left her two children to be raised by her family. When I related this information to the high school students, teachers, and parents at the end of my talk, I couldn’t stop my voice from cracking. The audience was deathly silent after my display of emotion but many of the parents afterward told me that it had really helped to punctuate the message of the day.
I have watched over the years as the primary mode of HIV transmission to women has shifted from IV drug use to the consequence of heterosexual activity with infected males. I have seen the dramatic reduction in fetal infection as the result of access to treatment in countries like the U. S., and the continuing tragedy of the disease in women and babies in underdeveloped countries where such treatment is not readily available. At least 20,000,000 women are infected with HIV worldwide, and I would bet that if we had truly accurate numbers from Africa, China, and Southeast Asia, the numbers would be even higher. In our own country, it has only been within the past year that standard of care to offer screening to all pregnant women has been changed to a standard that expects such testing to be performed as part of routine screening in pregnancy. I can only ask now after all these years, why has this taken so long?