Brave, Braver, Bravest

A couple with HIV who long for their own child muster the courage to face the consequences

By Stewart Massad|Monday, November 01, 1999
RELATED TAGS: HIV & AIDS, FAMILY HEALTH
I've been dreaming about having a baby," said Ashley. That's not a strange thing for a childless 36-year-old woman to tell her gynecologist, but it surprised me because this patient is HIV-infected. Having a baby implies having a future, something that those of us who have watched women die of AIDS once never dared hope for.

But Ashley has always been tenacious. Six years ago, the boyfriend who introduced her to heroin and HIV died of pneumonia, leaving her resolved to convince others not to duplicate her mistakes. She began speaking in schools, women's shelters, and halfway houses, wherever she could find an audience for warnings about unsafe sex and dirty needles. Before long she met Ron, another former drug user whose HIV diagnosis had shocked him into getting clean. Their collaboration in the fight against AIDS inspired a love bold enough to include the prospect of having a child.

When Ashley came under my care a few years ago, she told me she had initially fought against AIDS with little hope of victory. But in 1994, she participated in a landmark study. The results demonstrated that a combination drug therapy including inhibitors of the HIV protease enzyme, begun early in the course of infection, could reduce the virus to undetectable levels in blood samples and prolong life. Ashley began to dream of having a child. She read all she could about her disease and the latest advances.

"I've been thinking about this for a long time," she finally said, as we sat together in a conference room, "but it seemed so unfair to bear a child I'd never be there for. Now, for the first time since my diagnosis, I feel like there might be a life for me. I want your perspective."

I took a long breath. Until recently, children born with HIV usually died as infants or toddlers, from diarrhea, pneumonia, or meningitis. Thanks to advances in antiviral therapy, those days are largely past, and children born with HIV now live into their teens and beyond. But all physicians who saw the 1980s, the first decade of the HIV epidemic, have memories they can't expunge--children isolated from other children, interacting only with parents who disappeared into addictions or died, doctors who had to abandon them for other patients and rotations, nurses who had to go on to other shifts and families of their own.

Those cases led some doctors to discourage HIV-infected women from bearing children. At that time, the odds of bearing an infected baby were unknown. To women who conceived unintentionally, the uncertainty was unbearable, and abortion often seemed the kindest choice.

In 1994, that uncertainty and fear began to recede. Results from the Pediatric AIDS Clinical Trials Group, a national consortium of clinicians and patients involved in experimental studies, showed that when mothers were treated with the anti-HIV drug zidovudine during late pregnancy and labor, only 8 percent of the babies were born HIV-infected. Among women given placebos, 26 percent of the babies were born HIV-infected. By lessening the amount of HIV in the mother's blood, zidovudine reduced the exposure of the baby to blood-borne virus during delivery. The results were so impressive that giving zidovudine is now standard for all pregnant women infected with HIV. In addition, obstetricians now encourage HIV testing for expectant mothers to prevent unwitting maternal transmission of the virus.

More recent studies have deepened our understanding of anti-HIV drug therapy. When mothers take zidovudine along with protease inhibitors and other drugs, the risk is much lower than when they take zidovudine alone. In Ashley's case the infection was relatively well controlled. At 397, her CD4 count, the number of infection-fighting T cells, was OK, and the virus in her blood was too low to show up in tests. Staying healthy required a complicated drug regimen: pills taken up to five times each day, some with food, some on an empty stomach. But Ashley was nothing if not dedicated.

"Times have changed," I told Ashley. "The odds have improved, but your child could still be born with HIV and never live a normal life. And to say that the odds of an infected baby are 1 percent or 3 percent doesn't mean the baby would have a 1- or 3-percent infection: It's all or nothing. Can you live with that?"

She nodded. "It's like playing Russian roulette with a gun that has 30 chambers: If I'm unlucky, I'll still get blown away." She stood up. "I'll let you know."

I didn't see her until she returned six months later for her annual Pap smear. "We're trying," she told me. "Some people tell me that it's selfish, that any risk of handing on this disease is too great. But to me, having a baby is standing up to the virus. We think it's time to look ahead, to create life, not just avoid dying."

We talked about the ethical issues her pregnancy raised. We talked about how HIV mutates rapidly, and the same viral strain can evolve differently in different individuals with different immune systems and genetic makeups. Ashley accepted that if Ron stopped using condoms it was theoretically possible that she might get infected with a more virulent strain of HIV. She understood that in the months or years to come the virus she carried might become resistant to drugs, killing her before her baby had a chance to know her. She had made plans: Her sister had agreed to raise the child if necessary.

Within three months, Ashley was pregnant. She faced morning sickness, which compounded the nausea caused by her anti-HIV drugs. Twice she had to be admitted to the hospital because she could not keep any liquids or anti-retroviral medications down. But with an antiemetic patch behind her ear, she managed to keep taking her pills, even when she could swallow nothing else.

By the fifteenth week of pregnancy, Ashley's appetite returned. The next issue she faced was amniocentesis. For pregnant women of her age, genetic testing is standard to identify babies with Down syndrome and other defects. But the needle required to draw cells from the amniotic fluid can introduce HIV into the fetus. Ashley decided to forgo the procedure, as HIV-infected mothers are advised to do, and get a detailed ultrasound instead. Her knuckles were white as she clutched Ron's hand during the procedure, but the ultrasound was fine.

Ashley's contractions started early during her third trimester. Soon after, she quit work to rest in bed. Weekly ultrasound scans showed the baby growing and kicking, stretching in anticipation of birth.

How to deliver the baby was the next critical issue. Cesarean section reduces the risk of HIV transmission to the child because the baby encounters the mother's virus-infected blood only briefly during the procedure. Unfortunately, the risks to the mother--infection, bleeding, and anesthetic complications--are higher for cesareans than for vaginal deliveries.

"All that matters is protecting my child. I'll take the knife," she said.

Eight months into the pregnancy, Ashley's contractions picked up again. Her cervix softened and began to open. We had to perform the cesarean before the bag of amniotic fluid broke, exposing the baby to virus in the mother's body.

Like any surgical procedure, cesarean section requires all the usual precautions: gowns, masks, gloves. But in the age of AIDS, we have added new barriers. The masks have shields to protect against splashes of blood. The gowns are impermeable. Everyone on the operating team wears two sets of gloves, and shoes are covered with knee-high gaiters. Still, performing a cesarean section on a woman with HIV is frightening because the initial focus is not to stop the bleeding but to deliver the baby as quickly and safely as possible. Removing the placenta is especially worrisome, because potentially lethal blood mixes with amniotic fluid and spills over the operating drapes.

Ashley's surgery was uneventful, and her baby girl, although small, seemed to thrive. She longed to nurse her daughter, but she had to give her formula to avoid transmitting the virus through breast milk. When the time came to test the baby for HIV, Ashley burst into tears. When the test results came back, she cried again. The child had escaped infection.

The parents named her Hope.



Doctor on Call

Stewart Massad is an obstetrician/ gynecologist at Chicago's Cook County Hospital. Since he arrived at the hospital in 1993, his experience in caring for HIV-infected patients has changed dramatically. "It's scary to know you could get infected," he says, "but now it's less scary. And it's less stressful because patients are less likely to die when you're following them. They keep coming back. Doctors are more relaxed--there are more smiles and more joking." Massad has been a contributor to Vital Signs since 1995.
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