The Toughest Choice: Motherhood and HIV

By Jordan Lite

"In the split second she told me that I had HIV, I thought 'Oh my God, I'm never going to be able to have children.'"

Rebecca Denison knew she wanted kids. No question about it.

She had a husband she adored. She knew he would make a great dad. They looked forward to getting pregnant during Rebecca's last semester in law school. It was all planned out.

All that changed 10 years ago when Rebecca accompanied a friend to an HIV test. The friend, whose sister was dying of AIDS, was okay. But the counselor had bad news for Rebecca.

"In the split second she told me that I had HIV, I thought, 'Oh my God, I'm never going to be able to have children,'" Rebecca says. "I felt this loss — not only that I would die but that everything would die with me because I had no children."

While Rebecca was able to come to terms with her own mortality, she could not fathom missing out on motherhood.

"If you don't want that… it's not a big loss," Rebecca says. "But if you expect to spend 20 years of your life doing that, it's a really big loss."

The truth of the matter was that Rebecca was healthy. The amount of virus in her blood was undetectable and she showed no symptoms of HIV.

While participating in a study of asymptomatic HIV patients, Rebecca learned she had options when it came to children. Studies showed that HIV-positive pregnant women who took AZT cut their chances of transmitting the virus to their children from as high as 30 percent to as low as 8 percent.

But this news still didn't give Rebecca and her husband, Daniel, who was HIV-negative, the green light. There were still more confusions.

Doctors don't believe the risks of pregnancy are any greater for HIV-positive women than for those without the virus unless they are already very sick, according to advocacy groups including Project Inform. But, like many prospective moms, Rebecca was more concerned about the health of any baby she would have than about her own.

Children with HIV often suffer myriad problems. The virus can disrupt normal growth and development, and infected children may experience chronic or recurrent diarrhea, pneumonia and a host of other infections, according to the Working Group on Antiretroviral Therapy and Medical Management of HIV-Infected Children.

While some kids may benefit from the protease inhibitor drugs that have been successful in treating adults, only nine of 13 HIV medications available are approved for use in children, and none are approved for children under the age of two years.

When Rebecca was diagnosed with HIV in 1990, an estimated 1,000 to 2,000 infants in the United States were born with the virus each year, according to the Centers for Disease Control. Perinatally-acquired AIDS cases, however, declined 66 percent between 1992 and 1997 as preventive treatments became available.

Overwhelmed by the flurry of information, Rebecca began to educate herself. And what she learned was that she was not alone.

Only a year after her diagnosis, Rebecca started a nonprofit in Oakland, Calif., called Women Organized to Respond to Life-threatening Diseases. By speaking publicly about having the virus, she educated others about HIV.

"Infected women with infected children would come up to me and say they regretted their children had HIV, but not that they'd been born," Rebecca says. "For those women, the child was so much more than the disease — someone who has spirit and a life and personality."

She and Daniel decided to try to have a baby. After three months of failed at-home artificial insemination attempts, they opted to try it the old-fashioned way, running the risk that Daniel would become infected.

A month later, twins Sophia Claire and Sarah Catherine were conceived on a camping trip under a full moon. Daniel is still HIV-negative.

It wasn't an easy pregnancy. Rebecca was nauseous for months. And as the pregnancy continued, Rebecca grew much more nervous about the possibility that the twins would be exposed to HIV. At 33 weeks, she had to be hospitalized because she went into pre-term labor. Though she was worried about its long-term effects, which still are unknown, she began the AZT regimen immediately.

When the girls were born, on March 12, 1996, they were immediately tested for HIV using PCR, a technique that can look for actual virus in the blood, rather than the antibodies that standard HIV tests seek out. Four days later, the tests came back negative.

"I feel like I'm supposed to say that throughout the whole pregnancy I was terrified, " Rebecca says. "I wasn't. I was concerned. I was preoccupied with trying to make the right decisions in the pregnancy."

Rebecca has been lucky, of course. In addition to being asymptomatic 17 years after being exposed to HIV, she has healthy daughters, a supportive husband and a close network of friends. Still, some of her concerns remain — namely, that she won't live to see her daughters grow up.

"When you have HIV you don't get to choose from good choices," Rebecca says. "I had to accept that I didn't have control over whether they would lose me."

Rebecca writes letters to her daughters telling them how much they were wanted.

"I've recorded tapes of me singing lullabies so they can hear their mother's voice," Rebecca says. "Those are things that I think every parent should do. Some do and some don't because some take it for granted that they're going to be there."

And she'd do it all over again.

"I decided it was better to give them life and prepare them to deal with suffering than not to give them life at all."

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