Men who were bedridden three years ago are now jogging three times a week... and wondering how they can return to the workplace without jeopardizing their disability benefits. Women who were fighting fulminant fevers and intractable infections three years ago are now hopscotching the country to promote HIV prevention programs... and wondering whether they can have children. In this new world, living with HIV has new implications, new ramifications, and new dimensions. People with HIV are now daring to think what was once unthinkable: that they may live long enough to need a retirement package; that they may eventually pay off their mortgage; that they may actually grow old, bald, paunchy, and myopic.
Combination antiretroviral therapy, by dramatically slowing the rate at which HIV assails and destroys the body's immune system, has eased a wide range of purely clinical problems... and raised a wide range of new social issues. One of those issues -- little discussed at scientific symposia but much talked about among people living with HIV -- is whether it is now possible for women with HIV to have children.
In the United States alone, approximately 7,000 women with HIV conceive and deliver babies every year. Some of those women do not know that they are infected with the human immunodeficiency virus; others do not take that factor into serious consideration when they have sexual relations. As a result, some 7,000 to 8,000 infants are born to HIV-positive American women every year. Of that number, between 500 and 600 prove to be infected with HIV. With better prenatal care and appropriate antiretroviral therapy before and during childbirth, it should be possible to reduce that number to less than 1% of all infants born to HIV-positive women.
(For further information about transmission risks -- and the advisability of cesarean section for HIV-positive pregnant women -- see "98% Sure" in the Newsline section of this issue. For comprehensive coverage of the general topic of HIV disease in women and children, see the August 1997 issue of HIV Newsline, which was wholly devoted to this all-important subject.) These are not the pregnancies we wish to focus on in this special issue of AIDS Care, however. There is already a considerable literature dealing with unanticipated, unwanted, or ill-advised pregnancies among seropositive women. Instead, we want to devote this special issue to a topic that has thus far received much less attention: Whether an HIV-positive woman, after considering the facts and weighing the odds, should undertake to conceive a child.
To assist women -- and their partners -- in reaching a prudent decision with regard to conception and childbirth, we have commissioned a series of interrelated articles on this important topic. The first of these special articles, "Can I Have Children?," was written for us by Dr. Kimberly Y. Smith, a specialist in infectious disease at Rush-Presbyterian-St. Luke's Medical Center in Chicago. Dr. Smith describes the risks of pregnancy -- for both mother and infant -- from a clinical perspective. Paramount among these risks, of course, is the chance that a seropositive woman will infect her baby with HIV, either in the womb or during delivery.
Rebecca Denison, the founder of Women Organized to Respond to Life-threatening Diseases, which publishes a monthly newsletter for women with HIV, has confronted those risks -- and triumphed over them. She describes that experience in "The Toughest Decision I Ever Made."
My colleague Dawn Averitt, who served with me as a guest editor of this special issue of AIDS Care, looks at the same subject from yet another point of view -- that of an HIV-positive woman who has been giving careful consideration for some time now to the ethical, moral, and practical aspects of conceiving a child. Every woman with HIV who is experiencing Dawn's dilemma -- and who shares her desire for children -- will want to read "What if..." in this special double issue of AIDS Care.
All persons who are consciously considering the joys and responsibilities of having children have a number of important decisions to make. The first of these choices applies to all prospective parents, irrespective of HIV status: Do I -- do we -- really wish to have a child? The human infant is the most dependent of all animal species, and thus all parents, regardless of their circumstances, have an absolute obligation to ensure the well-being of their offspring.
The second question that anyone who is contemplating conceiving a child must ask is: Have I -- have we -- fully and forthrightly considered the grave responsibilities as well as the great joys of raising a child? These obligations go well beyond providing food and shelter, day in and day out, for decades. For first-time parents in particular, the degree to which a newborn changes one's daily life can be very hard to anticipate -- and hard to accommodate. As any seasoned parent knows, from the moment that newborn arrives its parents are obliged to exchange the freedom to do what they want to do for the necessity of doing what is best for the infant.
Therefore, all prospective parents need to give the most sober and serious consideration to what child-rearing implies -- the end of independence and self-regard; the beginning of interdependence and self-abnegation. Young children can never be left alone, and their health and safety must be constantly monitored. This is a full-time, round-the-clock obligation, and anyone who thinks it sounds onerous -- anyone who thinks that the demands of parenthood outweigh the satisfactions -- should postpone having children.
Sexually active couples need to decide whether they wish to conceive a child or not. If they decide that they want to avoid pregnancy, they must select an appropriate form of birth control. Here, of course, HIV infection affects the decision-making process, since birth-control pills do not prevent the acquisition of HIV or other STDs. HIV-positive women who choose birth-control pills to prevent pregnancy should discuss this decision with their primary-care providers, because these pills can reduce the effectiveness of some antiretroviral drugs, and dose adjustments are therefore mandated.
Intrauterine devices will also prevent pregnancy, but like birth-control pills, they do not prevent the transmission of HIV. Therefore, all sexually active couples should use a fresh latex condom every time they have vaginal or anal intercourse. When used correctly, this form of barrier protection is almost 100% effective in preventing HIV transmission (see "Where the Rubber Meets the Road," Vol. 1, No. 2 of AIDS Care. This article includes easy-to-follow diagrams that show readers the correct use of the new "female" condom as well as condoms worn by men).
Women living with HIV infection who want children should give serious consideration to adopting a baby. This option holds many attractions, not least among them that it provides the adopted child with a loving, nurturing, stable household. For one thing, adoption eliminates the risk, modest but real, that even with the best of luck and the best of medical care an HIV-positive woman will pass the virus to her baby. And for another thing, adoption offers women with HIV a range of choices -- including the choice to adopt a toddler or even a youngster of school age rather than a newborn. For seropositive women who want to raise a child but who are not sure they are up to the round-the-clock rigors of caring for a newborn, this option may have special appeal.
Women with HIV who ponder all of their options, carefully weigh all of the risks, and then decide that they want to attempt to conceive a child must also recognize that unprotected sexual intercourse is not without risks for their partners. If that partner is uninfected, there is a small but undeniable chance that he will acquire the virus during sex. And if that partner is HIV-positive, there is still the risk that unprotected sexual relations will pass drug-resistant forms of HIV between partners. Data presented at the 12th World AIDS Conference in Geneva, Switzerland, last summer indicate that a significant number of new HIV infections represent infection with a form of the virus that is already resistant to one or more of the drugs used to combat HIV, so this is a real, and serious, consideration.
If a woman with HIV wants to conceive a child with an uninfected partner, she can be artificially inseminated. If a woman wants to conceive a child with an HIV-positive man, she and her partner should investigate whether any or several experimental treatments that are designed to "wash" the HIV out of semen may reduce the risk of transmission (see "Positive New Fathers: Refinement in insemination process may allow HIV-positive men to safely father children" in the Newsline section of this issue).
Potential parents who are living with HIV also need to think about their longevity. How long can they reasonably expect to live, given what we now know about the prognosis for individuals at various stages of HIV infection? Is their current antiretroviral regimen effectively suppressing the virus? Can they reasonably expect to live long enough, and remain hale enough, to raise a newborn child to independence? If not, have they considered how to cope with the need to designate other care providers for their offspring?
All couples who are contemplating having children need to discuss the subject of guardianship with their families and friends. This prudent provision is one every parent needs to make, and people who are living with a potentially life-threatening disease are especially obligated to make such provisions early and concretely. Whenever possible, this discussion should be coupled with estate planning and other end-of-life provisions -- to ensure that surviving offspring will be provided for. There can be no doubt that thoughtful advance planning makes any future crisis or transition easier for the child, even if facing mortality is hard for the child's parents.
Thoughtful advance planning on the part of seropositive parents must also involve provisions for the day-to-day care of their children should their own health status change. What if the parent becomes ill and requires hospitalization, especially for an extended stay? What if that hospitalization leaves the parent too enfeebled to look after himself or herself, let alone a small, dependent child, for days or even weeks after the parent has returned home? Because the prospect of hospitalization is a very real one for people living with HIV, all seropositive parents should make specific plans for the short- and long-term care of their children. Feeding schedules, well-baby clinic appointments, favorite foods and favorite baby-sitters -- all this information should be written down, so it is readily available to the children's interim care providers.
All seropositive parents need to face the future realistically and plan for every eventuality -- including their own death. Part of that planning, in the era of maximally suppressive antiretroviral therapy, is long-range planning. Many women who are living with HIV can now reasonably expect to live long enough to raise children -- and some of those women may live long enough to see their children graduate from school and enter adult life. Advances in the diagnosis and treatment of HIV infection have prolonged the lives of everyone who is living with the virus -- assuming those individuals get the medical care they need and comply with the dosing schedule they are assigned. In such an altered world, radiant with hope, the prospect of having and raising children is a real one, and women who want to undertake this awesome responsibility deserve our full support.
Catherine M. Wilfert, M.D., is Scientific Director at Elizabeth Glaser Pediatric AIDS Foundation and Professor Emerita at the Department of Pediatrics of Duke University Medical Center, Durham, NC.