August 7, 2001

Women Now Look Beyond H.I.V., to Children and Grandchildren




Mindy Prager, a psychiatrist who turns 40 this year, is trying to have a baby. Like many other women who delayed pregnancy, she has several concerns.

She wonders if she is too old to begin motherhood, if she is still fertile and if her boyfriend of four years is as committed to the idea as she is. But Dr. Prager also has other things on her mind. She will need artificial insemination to conceive, and if it works she will have to balance the needs of pregnancy with the handful of pills she needs every day to stay alive. Dr. Prager is H.I.V. positive.

"In the past, I never allowed myself to think about having a baby or even look at a baby. I was just waiting to die," said Dr. Prager, a New Yorker living in Istanbul, who was infected with H.I.V. 15 years ago after being pricked by a needle during her medical residency. "But now, everything has changed, and I suddenly have the opportunity to have a child."

A few years ago it was almost unheard of for a woman who knew she was infected with H.I.V. to attempt to become pregnant. Most women who knew they were H.I.V. positive were not willing to risk the 25 percent chance they would have a child carrying the virus. But now, with a regimen of medication, an H.I.V.-positive woman can reduce the chance of infecting her child to almost zero.

Armed with this information, small but increasing numbers of H.I.V.-positive women are deciding to have children.

But even as they embrace motherhood, many worry about the uncertain future that comes with a life-threatening disease. They worry about their children's health as well as their own. Although a vast majority of the children are thriving, it is too soon to tell whether the powerful antiretroviral drugs the women took during pregnancy will have long-term effects on the children.

Experts say the reduction in mother-to- child transmission is one of the few success stories in the 20-year history of AIDS in America.

"As far as perinatal transmission, there has been a remarkable change over the last decade," said Dr. Howard Minkoff, chairman of obstetrics and gynecology at Maimonides Medical Center in Brooklyn. "Over all, the risk of any American woman having a child with a major birth defect is 2 to 3 percent. In comparison, an H.I.V.-infected woman who does everything right can now be reasonably sure that there is a 99 percent chance that her baby will be born free of the virus."

Rebecca Denison, founder of an advocacy group for H.I.V.-positive women, said, "The number of women who I've talked to about having children has skyrocketed."

The group, Women Organized to Respond to Life Threatening Diseases, based in Oakland, Calif., is assisting about 40 pregnant women who are H.I.V. positive.

Ms. Denison, who is 39 and found out she was H.I.V. positive 10 years ago, is the mother of twin girls born in 1996. "In the old days there were a handful of us who would get together and talk about how much grief we had because we wanted to be mothers, but were positive and would never be able to have kids," she said. "Now most of us have either done it, are gathering information about it or trying to get the treatment regimens stable enough to get pregnant."

But, she continued, "Whether we will live to see our children grow up is something that we talk about a lot. In my case, I hope to see my children graduate from high school. But sometimes it crosses my mind that I am so glad that they have their father who can take care of them in case something happens to me." (The children's father, Daniel Johnston, does not have H.I.V.)

The Centers for Disease Control and Prevention estimates that every year 6,000 H.I.V.-infected women give birth in the United States, and most are on some kind of antiretroviral therapy. In the era before medication was recommended for pregnant H.I.V.-infected women, 1,000 to 2,000 babies were born with the virus each year. But from 1992 to 1999, there has been a vast decrease in children born with H.I.V. Now, about 300 to 400 H.I.V.-infected babies are born each year.

In the past, most H.I.V.-positive pregnant women had no idea they were infected until after they became pregnant and it was discovered by routine testing. But that has changed.

Dr. Janet Stein, associate director of perinatology at Beth Israel Hospital in New York, who treats about 20 to 40 H.I.V.- positive pregnant women each year, said: "Before, most women who came to me happened to be positive and happened to be pregnant. Now we're seeing more women who know they're positive, who are well and are deciding to have children."

The first trickle of good news came in 1994 when a study of 477 women found that administering a three-part regimen of the drug AZT to an H.I.V.-positive pregnant woman could reduce the rate of mother-to- child viral transmission by nearly 70 percent. The findings were so important that the research trial was stopped in order to offer AZT to women in the group who had received the placebo but had not yet delivered, and to their infants less than 6 weeks old.

Because of the new information, the following year, the Public Health Service recommended universal prenatal H.I.V. counseling and H.I.V. testing with consent for all pregnant women in the United States. (In 1997, New York State began the controversial practice of mandatory testing of newborns without consent; only New York and Connecticut have such testing in place.)

More recently, studies have shown that combination therapy, the regimen of combining several antiretroviral medications that has prolonged life for many people infected with H.I.V., can, along with AZT, lower the risk of perinatal transmission even further. Taking combination therapy to reduce the amount of virus in the bloodstream to undetectable levels can decrease the chance of mother-to-child transmission to about 1 percent.

Despite the success stories, researchers remain troubled by the possibility of long- term effects from very potent medication on both mother and child.

"None of the drugs are nontoxic," said Dr. Lynne M. Mofenson, associate branch chief for clinical research at the Pediatric, Adolescent and Maternal AIDS Branch of the National Institutes of Health. "These findings should not deter women from taking the medication, but it's very important to acknowledge that babies need follow-up long term to monitor any potential effects in the future."