The Toughest Decision I Ever Made
How My Husband and I Approached Pregnancy, Knowing That I Have HIV
My name is Rebecca, and I am HIV-positive. When I tested positive in 1990, the first thought that came into my head was "Does this mean that I can't have a baby?" I quickly turned my thoughts to other concerns: How long was I likely to live? Had I inadvertently infected my husband? How would I tell my family?
Time has answered the first question: I am still alive -- and well. An ELISA test answered the second question: My husband, Daniel, is HIV-negative. And over time I have answered the third question -- by coming out about my HIV status. I did that in stages: I came out first to close friends, then to my family, and finally to the world -- through WORLD, the newsletter that I founded when I discovered that there was almost no information available to women like me who are living with HIV.
But for many years I had no answer to the first question, and I never got over the sadness of thinking that I would never be able to have children. I persuaded myself that I could channel my maternal feelings in other ways, in useful, purposeful ways -- and that doing so would transform my sadness into good works. For a time it did. With unstinting support from Daniel and from other HIV-positive women, I started the information service and support network now known as Women Organized to Respond to Life-threatening Diseases, and the women who became part of WORLD became part of my family.
"I told myself that if I paid close attention, I would eventually hear about a new technique, a new treatment, a new device that would permit me to have a baby safely. What I wanted was what all HIV-positive women want: a guarantee that my husband and I could have a healthy, HIV-negative baby -- and that I would live to watch our child grow up. But as all of us know, there are no guarantees in life."
But the hole in my heart -- the hole that only a baby can fill -- remained. Daniel and I got a puppy. We adored her, but she was not a baby. I have 19 nieces and nephews, so our lives were filled with children, but it was not the same. For me, anyway, the grief of not having a child was always greater than the grief of having HIV.
I told myself that if I paid close attention, I would eventually hear about a new technique, a new treatment, a new device that would permit me to have a baby safely. What I wanted was what all HIV-positive women want: a guarantee that my partner and I could have a healthy, HIV-negative baby -- and that I would live to watch our child grow up. But as all of us know, there are no guarantees in life.
My decision-making process was a five-year battle between my heart and my head. My head said, "It's simply too big a risk. There are other ways to feel fulfilled. It's profoundly, deeply selfish to put a baby at risk. And besides, you have been in such good health for so many years now -- what if the stress of pregnancy undermined your own health?" I listened to my head, and I tried to drown out my heart. I tried to be absolutely rational. But I found that I couldn't. At one point I realized that I actually resented how effective condoms are in preventing pregnancy. I kept hoping one would break, and I would get pregnant accidentally -- so that the decision I was wrestling with would be resolved without my having to make it.
To give me a better perspective on the risks and responsibilities of having a child, I sought out HIV-positive women who had had children -- which is something that every seropositive woman should do if she is considering conceiving a child. The main thing I wanted to know was how they had made the decision to get pregnant. But I also made a point of talking to women who had given birth to children with HIV. I wanted to know how they felt. I wasn't surprised that every one of them regretted giving birth to a seropositive child. What did surprise me was that so many said they didn't regret their decision to have a child.
Armed with this information -- and assisted by a therapist, by Daniel, and by good friends -- I began to come to terms with what my heart was telling me. My heart, interestingly enough, had never been in conflict about this issue. It said simply, "I want this!"
"Society sides with older women who want children, even as it condemns HIV-positive women for wanting the same thing, and it took me a while to realize that I had more in common with those women than I imagined. We might be divided by our HIV status, but we were united in our desire to have children -- and in our recognition that pregnancy, for us, involved a higher than average degree of risk."
I had all but resolved to attempt to get pregnant when I got a call from an HIV-positive friend, a woman I respect but had not chosen to consult about the battle my heart and head were waging. The call came the day after that woman buried her three-year-old daughter, dead of AIDS. "Rebecca," she said, "my daughter suffered every day of her life. I don't understand these women who get pregnant when they know they have HIV. Don't they realize? If your child gets AIDS, it's not you who suffers, it's your child."
I knew she was right. And I knew I had to rethink my decision. I had to listen to my head. I was doing precisely that when I learned that my best friend and her husband had decided to try to have a baby. As it happens, my friend is HIV-negative. As it also happens, she is 42 -- and for women her age any pregnancy is a high-risk pregnancy. Older women are statistically more likely to miscarry, and they are also more likely to have complicated pregnancies, to deliver early, and to deliver babies with birth defects.
What my head told me is that society sides with older women who want children, even as it condemns HIV-positive women for wanting the same thing. In both groups of women, pregnancy carries a higher than average degree of risk, but in the former group those risks are deemed acceptable -- perhaps because society at large does not have as clear an idea of what they are. It took me a while to realize that I had more in common with those women than I imagined. We might be divided by our HIV status, but we were united in our desire to have children -- and in our recognition that pregnancy, for us, involved a higher than average degree of risk.
As I contemplated the decision my brave 42-year-old friend had made, I found myself rescinding the decision I had made the day my other friend buried her three-year-old. It was clear to me that my heart wasn't going to let go of this issue, no matter what my head said. It was almost as though my child already existed in spirit, and he or she was pleading to be allowed into my life.
In January of 1995 Daniel and I went to the Perinatal AIDS Clinic at San Francisco General Hospital. We told the staff, "We are not asking your advice, and we are not asking you to endorse our decision. We've already decided: we want a child. What we want from you is to make all of this as safe as possible -- for both of us, and for our baby."
Recognizing that there is a correlation between viral load and the likelihood of mother-to-child HIV transmission, Daniel and I wanted to attempt conception while my viral load was low -- which it was at the time, and which it remains to this day. (For more specific information on factors that affect mother-to-child transmission, including viral load, see "Can I Have Children?" by Dr. Kimberly Smith in this issue of AIDS Care.) For the next three months we carefully measured my temperature every day, to establish exactly when I was ovulating, and at the appropriate time we used syringes supplied by San Francisco General Hospital to inseminate me.
Acknowledging -- and accepting -- the risks
I am not sure why intrauterine insemination did not work for me, as it has for so many other women, but it didn't. It was Daniel who suggested that we try "the old-fashioned method" the next time I began to ovulate. He was more concerned about the risk to the fetus if my viral load went up while we were trying to conceive than he was about the risk to himself from one or two acts of carefully timed intercourse.
We were both well aware of the risk he was taking. Transmission of HIV from an HIV-positive woman to an HIV-negative man is less likely than from an infected man to an uninfected woman, but such infections do occur. Estimates of the risk of infection during a single act of unprotected vaginal sex vary widely, ranging from 1 in 500 to 1 in 5,000,000 (see "Risky Business," a full and frank discussion of the risks of HIV transmission during sex, which appeared in Vol. 1, No. 2, of AIDS Care).
Within days I was feeling vaguely nauseated and my breasts were sore. Could this mean that I was pregnant? At nine days we ran a home pregnancy test... which came back blue, for negative. A day later we ran a second test... which came back faintly pink. Could this mean that I was pregnant? As the Perinatal AIDS Clinic at San Francisco General Hospital soon confirmed, it did.
"The use of AZT results in a sharp drop in mother-to-child transmission of HIV. In most studies AZT has reduced the transmission rate from 25% to 8% or lower, and in some instances it has fallen as low as 3%. We do not yet know if the more powerful drug combinations mow in use will reduce mother-to-infant transmission rates even further, but it is reasonable to think that they will."
I got exceptional care at S.F.G.H. throughout my pregnancy. Good care makes a difference -- as "Good for Both Mother and Child," in the Newsline section of this issue, makes abundantly clear -- and I am profoundly grateful for the care I received during my pregnancy. Even so, I suffered horrible morning sickness during the first four months of my pregnancy. I threw up half a dozen times a day, and I had to fight dehydration, weight loss, and exhaustion on a daily basis. Then, just as I was finally beginning to feel like my old self, I was told that I was expecting twins -- and I was consigned to bed rest, to prevent premature delivery of those two babies.
At 33 weeks of gestation I began taking AZT, to reduce the chances that I would infect my unborn children in the womb or during delivery. As Dr. Catherine M. Wilfert, one of the guest editors of this special issue of AIDS Care, observes in her commentary, we have known since 1994 that the use of AZT results in a sharp drop in mother-to-child transmission of HIV. In most studies the use of AZT has reduced the transmission rate from 25% to 8% or lower, and in some instances it has fallen as low as 3%. In 1994 the standard of care for pregnant women with HIV was AZT monotherapy or two-nucleoside therapy. That standard has now evolved to include at least three antiretroviral agents, one of them a protease inhibitor. We do not yet know if these more powerful drug combinations will reduce mother-to-infant transmission rates even further, but it is reasonable to think that they will.
Toward the very end of my pregnancy I joined a study that involved getting one dose of nevirapine (Viramune®) as I was going into labor and giving one dose to the babies two days after they were born. Nevirapine, the first of the class of drugs known as non-nucleoside reverse-transcriptase inhibitors or NNRTIs, produces rapid and dramatic reductions in viral load. (Unfortunately, it also produces rapid resistance when it is given as monotherapy, which is why this drug is routinely used in combination with other antiretroviral agents.) More importantly, nevirapine has a unique capacity to penetrate the uterus -- and the idea behind this study was to use the drug as a kind of booster shot, to zap the virus in my body and the babies' bodies at the time when transmission is most likely to occur -- during delivery.
On March 12, 1996, Sophia Claire and Sarah Catherine were born two minutes apart by cesarean section. (For more information on C-section versus vaginal delivery, see "98% Sure" in the Newsline section of this issue.) I knew right away that my daughters had good lungs, because they were yowling up a storm. When they were one hour old, their blood was drawn for an HIV RNA assay -- which would tell us if the girls had been infected with the virus in utero. On the fourth day of my hospital stay, Daniel and I were told the results of those tests... which were negative for both babies! We now knew that our girls had not been infected in the womb. Follow-up tests, conducted over the next few months, established that they were not infected during delivery, either.
Sophia and Sarah, now well into the "terrible twos," exhaust us -- and make us deliriously happy. They are energetic, affectionate, and willful. They like to paint, dance, and make up their own words to familiar songs. They are in good health. Their father is in good health. And so is their mother. And when they crawl into bed with us early in the morning and I nuzzle their soft little heads while they stroke my cheek with their tiny fingers, I think to myself, "There is nowhere else I would rather be."
Rebecca Denison is founder of WORLD (Women Organized to Respond to Life-threatening Diseases), Oakland, CA.
Back to the October 1998 AIDS Care contents page.
This article was provided by San Francisco General Hospital. It is a part of the publication AIDS Care.