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HIV and motherhood: When not only the pregnancy test is positive

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Russelle Miller-Hill at Holcombe Rucker Park, near her home in Harlem. (Photo by Becky Holladay for CNS)

When Russelle Miller-Hill found out she was pregnant, she and her husband Kevin were thrilled. But when they set out to find a doctor to help them through the next nine months, “nobody would treat us,” Miller-Hill recalled in a recent interview. “Nobody would give us any care.” Instead, several physicians were shocked that Miller-Hill had even tried to have a child and implored the 33-year old to have an abortion.

The reason? Russelle Miller-Hill is HIV-positive.

That was in 1994. Today, her son Brandon is a healthy 13-year-old, and Miller-Hill, now 46, is helping women in the same situation make their way into motherhood.

Miller-Hill, an outreach worker for an HIV program in New York City, was a pioneer in what has now become a growing trend. HIV-positive Americans receiving optimal health care can expect to live for two decades or longer, and an increasing number of women are asking whether the disease need automatically prevent them from becoming mothers. A recent survey of HIV-positive women by researchers at Ohio State University found that one in four wanted to become pregnant. For women under 30, the number rose to almost 40 percent.

“Why shouldn’t I have another child?” asked Miller-Hill, who already had a daughter from another relationship before she got infected. “Just because I was positive didn’t mean that I stopped being a woman.”

The increase in HIV-positive mothers is also a sign of the growing number of HIV infections among women in the United States. In 1985, women represented just 8 percent of all new diagnoses, according to the Kaiser Family Foundation. Twenty years later that proportion had risen to 27 percent. In 2005, about 300,000 women were living with HIV/AIDS in the United States. The majority were between 25 and 44 years old. Some were born to HIV-positive women in the 1980s and are now thinking of starting their own families.

When Dr. Antonio Urbina, Director of HIV Education and Training at St. Vincent’s Hospital in New York City, began his job nine years ago, none of his HIV-positive female patients asked about the possibility of having a child. Today, said Urbina, he gets one or two questions about pregnancy every week.

And over the past several years, the medical means to fulfill this desire have improved significantly. The right treatment during pregnancy and birth, said Urbina, can reduce the risk of mother-to-child transmission to less than 1 percent. “Over the past three years,” said Urbina proudly, “we haven’t had a positive birth.” Last year, 19 HIV-positive women gave birth at St. Vincent’s.

As he would with any HIV-positive woman, pregnant or not, Urbina starts his patients on antiretroviral drugs to lower their viral load and thus reduce the virus’s activity in their bodies. Apart from one drug, Sustiva, none of the antiretroviral medications have shown negative impacts on the fetus’s development. “Obviously the biggest risk for the child is acquiring HIV,” said Urbina, “and that’s devastating.”

Although the bloodstreams of the baby and mother intermingle during pregnancy, less than 15 percent of all mother-to-child transmissions happen in the uterus. “The placenta is very good at filtering out bad stuff,” explained Urbina. Most transmissions happen during labor and childbirth, when the placental barrier is disrupted, and the mother’s blood can enter through the baby’s mouth or nose.

Women who have a high viral load, and are thus more likely to pass their disease on to their baby, usually deliver through C-section. Miller-Hill, whose viral load was relatively low during pregnancy, gave birth naturally, but had an I.V. with antiretroviral medication running into her veins during her delivery. Her newborn son tested negative for the virus after six months on medication and formula. Since the disease can be passed on through breastfeeding, HIV-positive women are advised not to do so.

Of course the baby is not the only one at risk when an HIV-positive woman decides to get pregnant. The difficulties often start with the conception of the child. Miller-Hill contracted the virus 20 years ago, but her husband Kevin is HIV-negative. To get pregnant, they chose to have unprotected sex. Couples who don’t want to take that risk sometimes try artificial insemination or in-vitro fertilization.

When both partners are infected, getting pregnant becomes even more complicated. They risk passing different strands of the virus to each other as well as infecting the child through the man’s semen. In such situations, sperm washing, a technique in which the man’s sperm is separated from the tainted seminal fluid in a centrifuge, can support a safe conception.

A pregnancy can also have negative impacts on the mother’s immune system. “A woman does run a risk of putting her own health at stake,” said Shonda Craft, assistant professor of Family Social Science at the University of Minnesota and lead author of the recent Ohio State University study. Before Miller-Hill became pregnant, she had a good T-cell count of 1000. T-cells are a type of white blood cell that is vital to the immune system. After the birth, her T-cell count was down to 300.

“It took me five years to build them back up to 500,” said Miller-Hill. Although such a severe loss of T-cells is unusual, said Monika Shah, a doctor at the Mom-Baby clinic at Harlem Hospital, any pregnancy can cause a lot of stress on a woman’s health.

Even for a child born healthy, like Brandon, a mother’s illness can have a psychological effect. “His life has been altered by HIV/AIDS,” Miller-Hill says of her son. He watches her take nine different pills every day and knows that a regular cold or flu can devastate his mother’s immune system. “There were times when I was sick and couldn’t get up and couldn’t play with him,” said Miller-Hill, recalling the side effects of different medications when she was trying to find the right combination therapy.

The stigma that is still associated with the disease can be another challenge for HIV-positive mothers and their children. Very often, women keep their status secret even from close family and friends in fear of negative reactions. “When you think about a child whose mother has cancer, they can go to school and say, ‘My mother has cancer,’” said Natalie Humphrey, a clinical psychologist who treats HIV-positive mothers and children at Harlem Hospital. “When the mother has AIDS, the school never knows.”

Although Miller-Hill is feeling well today, the precariousness of her health is a constant in her life. “I remember praying to see him just 1 year old,” she said about her son. “I still pray to see him every day, but now my prayer is to see him graduate from high school.”

E-mail: gks2113@columbia.edu