"There has been a child inside me waiting to come into this world for as long as I can remember. She has shown up in my dreams and been part of my psyche. Have you ever wanted something so deeply that you could feel it coursing through your veins and permeating every fiber of your being? If you have, then you know," HIVer Dawn Averitt wrote in a recent essay tellingly subtitled "Tough Choices...and the Right to Choose" in the Journal of the Association of Nurses and AIDS Care.
Averitt, a high-profile AIDS activist who lives in Asheville, North Carolina, tested positive in 1988 at age 19. Her first tentative inquiries about the possibility of ever having a child were met with grim statistics -- she had a 70 to 100 percent chance of infecting her baby -- and comments such as "Only consider it if you're a homicidal maniac." This was, of course, before HAART and undetectable viral loads, before tests to measure virus in the blood, before scientists even knew how HIV is passed from mother to child. Positive women faced a Sophie's choice -- either abort the fetus or gamble with your baby's life.
Today, federal researchers trumpet the reduction of perinatal (prebirth) HIV transmission as the biggest success story of the epidemic. Studies show that babies are mostly infected during childbirth or breast-feeding, and that a combination of effective HAART, good health care and bottle-feeding guarantees that 99 out of every 100 HIVers can become mothers with virtually no risk to their baby. So just as the Pill once revolutionized women's sexual lives, HIV meds are radically changing what it means to have HIV, extending not only life expectancy but life expectations. The time is ripe for a baby boom among the HIV parenting set. And with women making up almost a third of the estimated 900,000 HIVers in the U.S., the trend could be tremendous.
Even the conservative American Society of Reproductive Medicine (ASRM), a trade group that long discouraged fertility specialists from helping serodiscordant couples conceive, recommended this year that new doctors "ought not to deny" treatment to HIVers.
"Eight to 10 years ago, positive women used to come in with unplanned pregnancies and want to terminate," says Carmen Zorilla, MD, of the Maternal Infant Studies Center at the University of Puerto Rico. "Now we're seeing women who are seeking pregnancy." Antonio Urbina, MD, of New York City's St. Vincent's Hospital, says the number of HIV positive pregnant women he has seen over the past year has more than doubled, sparking him to start a monthly conference on the subject for HIV counselors. In June, Averitt and her HIV negative husband, Brad, joined this new baby boom, bringing their 8-pound, 5-ounce daughter, Maddy, into the world. Her family and friends rejoiced, but an embrace of positive parenthood by the medical establishment, let alone society in general, is slow in coming.
Four years ago, when HIVer Nicole Pitts, who lives near Oakland, California, was pregnant with her daughter, a doctor urged her, "Tie your tubes. You probably don't want to do this again." The doctor -- no rube but a savvy University of California practitioner -- knew that with proper care, the transmission rates were below 2 percent, but she still urged Pitts to take the drastic step of sterilization. "I was in shock," Pitts recalls.
As she sat in the clinic absorbing this advice, it hit her. "No," she thought, "I don't want to get my tubes tied." But, at the same time, she says, "I felt guilty, like this was a terrible, selfish thing. It made me question my own decision."
Pitts' desire to be a mother won out over her doubts. She now has two HIV negative children -- an independent, outgoing 3-year-old daughter, Jalyn, and a son, Quinton, 8 months, with big bright eyes. Of her doctor's proscription, Pitts says, "I wondered how many HIV positive women were getting the same bad advice." And this rocky road to maternity led her to become a perinatal advocate at Women Organized to Resist Life-Threatening Diseases (WORLD) in Oakland, where she counsels HIV positive women through pregnancy. "There are still a lot of people who don't understand the disease and the low risk of transmitting the virus to a child," she says. "I'm amazed by how many health-care providers are still in the dark."
MOTHER KNOWS BEST
Of course, even with an informed, supportive doctor, women face a complex choice that raises the knottiest issues of life with HIV: responsibilities vs. rights, self-empowerment vs. selfishness, not to mention your deepest hopes and fears. These conflicts are sharp enough when starting a new job, say, or falling in love, but they become acute at the prospect of raising a child. Averitt, now 33, had mulled over the idea of becoming a parent for years; a treatment advocate, she always made a point of following the ever-promising research in perinatal transmission. Still, this dynamo who founded WISE (Women's Information Service and Exchange), hiked the Appalachian Trail and serves on countless AIDS advisory boards, harbored deep doubts about whether she'd ever make the leap herself.
"For a long time I was less afraid of giving my baby HIV than I was of some side effects [for the baby] related to all the chemicals [HIV meds] I'd been using all these years," Averitt says. Then, in December 2001, the Antiretroviral Pregnancy Registry released a study of 2,800 pregnancies finding that HIV meds during the first trimester of pregnancy did not increase the incidence of birth defects. For Averitt and many other women, this study marked a sea change. While Averitt still voices concern at the lack of data on the long-term effects on children exposed to HIV meds in utero, she now felt reassured enough to make the leap. "The Registry data gave me the confidence to say that everyday people with very serious genetic issues in their family history choose to have children with much higher rates of poor outcome," Averitt says.
With her transmission fears tranquilized, Averitt had to deal with her equally difficult emotional ones: For starters, the risk that given her disease, her husband might one day become a single parent. "My husband and I had a lot of hard, scary conversations," she says. "Letting someone get close while I struggled with my own mortality was hard. Suddenly, it wasn't just about me anymore. It was about my partner and a baby, and I had a strong realization that I now had to fight this battle with every bit of strength I had."
Rock-solid family support made the decision easier. Averitt's mother, Sandra, is a professor of nursing who specializes in pediatrics and obstetrics. Ironically, just as Averitt and her husband were discussing parenthood, her mom was asked to co-author a paper on HIV and pregnancy. Once Sandra had boned up on the research, she came to her daughter with a seal of approval. But in the end, Averitt says, it all came down to intuition. "I knew this was something I was supposed to do," she says. "It felt so right."
But for many women with HIV, that feeling of "just knowing" never comes. Nicole Pitts says that every woman she counsels at WORLD deeply fears giving her child HIV -- and that for some, these doubts are too much. "The ones who stick the pregnancy out, and don't terminate, are the ones, like me, who have a strong desire to be mothers," Pitts says. "It's something we really want -- and we're going to seize the opportunity while we can." Urbina agrees that what these women all share is an intense emotional commitment. "Their two biggest fears are, first, that they can't get pregnant, and second, that if they do, they risk having a positive baby," he says. But learning that they can take steps to nearly eliminate transmission risk "makes them feel whole again."
Like Averitt, new mom Frances Alamo, of Bayamon, Puerto Rico, always wanted to have kids but never thought she could. The 18-year-old was born with HIV; at age 2, she lost her mother to the disease. When Alamo found out she was pregnant -- an accident -- she was terrified. She didn't feel ready for the responsibility: Because her boyfriend, Eddie whom she had met at a summer camp for HIV youth, is also positive, she feared for the child's health, future, everything. She was also scared to tell her grandmother, who raised her, because of her grandmother's intense disapproval of premarital sex -- especially for HIVers. "My grandmother always told me that I can't have babies," Alamo says, "that I could die and that the baby would have HIV."
In order to soften the blow, Alamo enlisted her boyfriend to break the news. Predictably, her grandmother's reaction was less than enthusiastic. "She told me, 'You're a crazy girl! How could you do that!'" Alamo recalls. Fortunately, a sympathetic doctor guided Alamo through the decision and let her know that chances were very good that she could avoid repeating history and likely have an HIV negative baby. Armed with this medical authority, the decision to defy her grandmother and continue the pregnancy became easier.
THE FUTURE IS NOW
Now that Alamo has a brand-new healthy boy, Eddeyl, she has taken steps to plan for his future -- whether it unfolds with or without a mother and father. "My best friend is my son's godmother, and if we're not here, she will take him," Alamo says confidently. "But I feel like I'm going to be around for a while. I hope and pray to God that He'll give me more life so I can be with my son for a long time."
Averitt has had to stare down the same demon. "Having Maddy has made me feel more mortal than ever," she says. "There are still days when I panic and say to myself, 'Please let me see her grow up.' Even though I've lived with this disease most of my adult life, it's my challenge every day to not panic and slide into a dark place."
Making future custody arrangements, as Alamo did, is a necessary measure that can help stave off fear, Averitt says. She often encourages HIV positive moms to draw up a living will or power-of-attorney arrangement, useful even in case of a temporary hospitalization. But Averitt has yet to take her own advice. "Making these arrangements feels like preparing for the worst," she says, "and that's a hard thing to do."
As any Mom or Dad will tell you, the decision to go forward with a pregnancy is only the end of the beginning of the parenting journey. Infants are HIV-tested at birth, 2 weeks, 6 weeks, 4 months and 18 months, and the anxiety felt at each marker is yet another kind of hazing in HIV positive parenthood. With her daughter, Jalyn, Pitts was so nervous throughout her pregnancy that she made a deal with herself that if her baby was born free of HIV, she would never get pregnant again. "The what ifs are terrifying, even though you know the facts and you know the chances of the baby being positive are very low," Pitt says. "But it's still nerve-wracking. It's just a sigh of relief when you know the baby is negative." The second time around, with Quinton, was easier, Pitts admits. In fact, she says, she didn't even think about the tests until the nurses called with the negative results.
No sooner are the drama and trauma of childbirth over than the mother faces the next transmission danger: breast-feeding. Breast milk is a highly efficient way to pass the virus on to kids. For Pitts, having to abstain was a stabbing loss. She had had a daughter 15 years ago, before seroconverting, so she knew the deep pleasures of that mother-child bonding. "It's just such a nice thing to do together," she says. "I really missed it with my two younger children. I longed for it." But Pitts developed her own ingenious substitute ritual. She bottle-fed her son close to her breast, making sure there was skin-to-skin contact. "It gave me a sense of closeness," she says, "and we bonded quite well."
Despite the frustration of so many added precautions, not to mention experiencing your own "toxicity" in the most tearing way, these women would never trade the experience for anything. Pitts says, "You just fall in love with your children. It's so beautiful and amazing, watching their first steps, their smiles. The best part is that I am here to see it all and to help them become great adults."
GETTING IT TOGETHER
This profound desire to see your children grow up can have some unexpected secondary benefits for HIV positive moms. Before her pregnancy, Alamo admits that she had stopped taking her HIV meds. Then, she says, "I realized I had to take them so the baby would not come out positive. I had to take care of myself. Even now, it's still hard to take the pills, but I'm doing my best because I'm a mom."
Alamo's doctor, Carmen Zorilla, will present an abstract this month showing that HIV positive pregnant women exhibit much better med adherence than their non-pregnant counterparts. Zorilla looked at a sample of 172 women with HIV, 40 of whom were pregnant. Perfect adherence was reported by more than 90 percent of the preggers but only 68 percent of the others. And the mother-to-child transmission rate for this sample of pregnant women was zero -- a sign of the synchronicity between women's self-care and having a healthy baby.
Likewise, the hard-won experience of life with HIV can help budding moms deal with the trials of pregnancy. For Averitt, years of battling nausea caused by her HIV meds made her a pro at tackling morning sickness. "I had intense nausea my entire first trimester," she recalls. "But I never threw up because I knew I had to keep the meds down. I think years of dealing with drug side effects gave me a different perspective on what was manageable and what wasn't."
But certain other lessons of the in-your-face HIVer go out the window with parenthood. Averitt was even in the habit of telling strangers on a plane that she was positive. Now that she's a mom, she finds herself reconsidering. She feels that it is up to her daughter to choose to what extent she wants to make HIV a focal point in her life. "I'm happy to talk about my experience and my pregnancy, but from now on, Maddy's experiences are her own," she said after a POZ interview and cover shoot.
While Averitt, Pitts and Alamo all have HIV negative children, each is still mindful of the stigma that AIDS may cause the little ones. Alamo knows firsthand how discrimination can affect a child. When she was in the second grade, a friend told her classmates that she had HIV. "No one wanted to play with me," she recalls. "I was sad all the time." Now she says she'll do everything she can so that her son doesn't suffer the same way. "That's something I'm very aware of," she says. "I'm going to tell him not to tell people his parents are HIV positive, and do what I can to protect him."
Alamo and her boyfriend are planning to marry soon and Eddie's preparing to enroll in school. Eddie, who also thought his HIV diagnosis meant he would never have a child, agrees that his son is a great blessing. "My baby is the best thing that's happened to me," he says. And Alamo's nay-saying grandmother has come around to be Eddeyl's biggest fan. Alamo says the baby has even strengthened her relationship with Eddie; her favorite moments are watching her son lying on his dad's chest, laughing, playing and communicating in their own secret language.
For Averitt, becoming a mother has made her less of a workaholic and has given her, for the first time, the ability to create limits in her overcrowded life. "There is nothing I do that is as important as sitting in the rocking chair with Maddy for two or three hours," Averitt says. "I hope I never lose sight of that."
Averitt can't resist pointing out a bit of poetic justice -- that she went into labor on the 14th anniversary of her HIV diagnosis. "It may be hokey, but I've brought a new life into the world," Averitt says. "Isn't this a great way to laugh in the face of this disease?"