``I've been dreaming about having a baby,'' Ashley said.
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. Before long she met Ron, another former drug user
who is HIV positive.
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.
In 1994, 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.
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.
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 15th 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.
