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breast-feeding and H.I.V.
weighing health risks
august 19, 1998
KAKULU, Uganda -- This village is really just a muddy patch
of ground in the tall trees near where the Nile flows out of Lake
Victoria. The men work on coffee plantations. The women bear
children, fetch water from the well about a mile away and cultivate
cassava, potatoes and bananas.
There is no running water, no electricity, no telephone. When
the long rains come each year, they wash out the dirt road for
weeks at a time. This is -- and has always been -- a place where
people who reach the age of 50 are old, and those who have seen
a doctor or swallowed a pill are rare.
The basic rules of public health are clear in Kakulu: only
drink water from the well, not from the polluted Nile; and breastfeeding
is the best way to nourish an infant. At least those were the
rules until a few weeks ago, when the United Nations, struggling
desperately to find a way to cope with Africa's AIDS epidemic,
took a giant step toward reversing them.
After long deliberation, U.N. AIDS officials announced that
women infected with HIV should consider feeding formula instead
of breast milk to their babies.
Even discussing such a fundamental shift in public health policy
has been agonizing for people who once staged protests in the
United States and Western Europe warning using infant formula
in the Third World -- where dirty water is often lethal -- would
kill thousands of children each year.
Switching to formula would affect the basic behavior of millions
of women, and in theory at least, it makes sense. Three million
children have died from AIDS since the epidemic began, and last
year alone there were more than 600,000 new cases among babies,
many of whom received the virus from the milk in their mother's
breast. Had they been drinking uncontaminated formula instead--
or had their mothers taken a short course of AZT to protect
them just before delivery -- more than a third might have been
saved.
But here, where theory quickly fades into the harsh reality
of the jungle, the math never seems to add up the right way. In
African villages there is no debate between breast and bottle
and no talk of using a drug like AZT. Instead, there has been
a simple discussion about who will live and who will die. Scarce
funds make drug treatments that have become routine in the United
States almost impossible to contemplate here. So people infected
with the virus die, and usually they die quickly. That makes prevention
the only hope for this continent -- where 30 million people have already
been infected and 10 million have died.
Feeding formula to babies whose mothers have HIV could save
tens of thousands of children each year. So could providing a
short course of AZT, which prevents the AIDS virus from multiplying
rapidly in cells, to a woman in her final stages of pregnancy.
It may sound simple. But nothing about AIDS here ever is.
"I would never be able to feed my baby with formula,"
said Margaret Birungi Nannyongoi, a slightly overwhelmed 20-year-old
woman who sat on the mud floor of her home, nursing her three-day
old child, Dorothy Nalule.
Dorothy is her third daughter - the first died, the next is
a listless, underweight two-year-old with flat, black eyes and
a constant cough. Dorothy, frail and pretty in a tiny cotton baby
dress, was delivered with the help of friends, on the only mattress
in the house.
Like at least 95 percent of Uganda's village women, Mrs. Nannyongoi
has no idea whether she is infected with HIV. She has never had
prenatal care, nor has she ever taken a blood test. She only knows
about HIV because it killed two of her brothers. The cost of formula
for one child -- when it's available in Uganda and when there
is clean water to mix with it -- is on average 1.5 times what
a village family earns each year. Mrs. Nannyongoi said she has
never seen anyone use it.
"It seems so difficult to handle," she said, after
hearing what is necessary to keep formula safe for babies. "How
would I have the time?" She is currently feeding her baby
10 times a day, and each of those days is filled with essential
chores.
Even if the formula were donated and delivered to her home,
as U.N officials hope it would be, she says it would be difficult
to find a way to fetch the water, boil it and prepare the meals
for her infant while also working in the garden and cooking for
her husband, herself and her other daughter. But when she was
asked if she would use formula if it meant giving her child a
better start in life, she said yes.
That's because formula holds promise -- unfortunately it's
a promise that is rarely realized in this part of the world. "Oh
sure, it could be great," said Dr. Francis Miro, the chief of
obstetrics and gynecology at Makerere University Medical
School in Kampala, the Ugandan capital.
Makerere is Africa's oldest university, and it was from here
nearly 20 years ago that the first vague reports of "slim
disease" -- as AIDS was called here before it had a name--
started making their way to America. Since then, more than
2 million Ugandans -- nearly 15 percent of the nation -- have
become infected, and of those, 1 million have died in this country
where many researchers think the AIDS epidemic may have begun.
"Do you know what I would love to be able to do all day?"
Miro asked rhetorically. "I would love to counsel every HIV
positive mother about her choices in life. I would love to tell
her about breast milk and about formula. Then I would love to
have a conversation with her about what would happen to her in
her village if she stopped breastfeeding. What would her mother
in law say? What would her husband do? And of course I would love
to make sure she understood the rules for keeping formula sterile
and that she complied with them.
"I would love to do all that," he concluded wearily. "But then
I wouldn't be living in Uganda and I wouldn't be talking to my own
people. I would be living in America and I would be talking to your
people."
Asked if he thought it was always foolish to recommend formula
to women living in villages, he closed his eyes and reeled off
the numbers: "Twenty seven percent of babies born to infected
mothers become infected from breastfeeding," he said. "In
rural areas 85 percent of babies will die from dirty water used
in formula. I know what they are trying to do, and I applaud the
effort. But you don't need a medical degree to figure out which
of those odds to take."
All you really have to do is take a walk down the red dust
roads near Kakulu. There are no toilets and few outhouses. People
live literally from day to day. Water from still pools, the birthplace
of malarial mosquitoes, is often used to drink because its so
far to walk to the well."The temptation is great sometimes,"
Mrs. Nannyongoi acknowledged. "We try to boil the water,
but sometimes we don't."
Outside, a man is raking about 50 pounds of coffee for bad
beans. Nearly a dozen children, mostly naked, play in the yard.
In a shack across the way, Halimah Namtovu, a 30-year-old woman
wrapped in black scarves, sits beneath a picture of Mohammed.
Two months ago she gave birth to the ninth of her children, all
of whom are still alive. She said she thought formula would be
a good idea, but she has trouble affording soy milk to give her
older children. A kilogram costs about a dollar and lasts less
than week. "We all do what our mothers did," she said
without any rancor. "If there is a better way, I have never
seen one."
Despite the habits of millennia, Miro and countless colleagues
agree that something fairly drastic must be done to help protect
children from HIV. If mothers who are infected with the virus
do not breastfeed, their children will have a far better chance
of survival.
What is more, AIDS experts now know that if a pregnant woman
is treated with a very inexpensive course of AZT during the final
stages of her pregnancy, during birth and for a few days after
her child is born, the chance of transmission of the virus to
the child is reduced by half. The cost of such a course of treatment
was until recently $200 per person, but with the help of the UN
AIDS program and the World Health Organization, the price is now
$50.
"This is the best life-saving program we have in the
developing world," said Dr. Joseph Saba, a clinical research
specialist with UNAIDS, who has coordinated the attempt to make
drugs more accessible to people in Africa.
"You cannot just say to these people you are too poor
to live. You have to say we are trying everything on earth to
stop this plague. They have to know that we are not condemning
them to death."
Saba comes often to Uganda to mediate between drug companies,
health officials and aid agencies in an effort to bring drug prices
down so that local governments and at least some people can afford
them. He knows as well as anyone that, as is the case with formula,
making AZT available to pregnant mothers raises almost as many
terrible new questions as it answers.
And the biggest one is obvious: will AZT encourage women to
have children who will all either die or become orphans? As soon
as the mother delivers, she will stop taking AZT; almost no African
women can afford to stay on it for long. That means she will die,
probably within two or three years, sometimes much sooner. Her
child will then almost certainly join the almost unimaginably
vast army -- in Africa alone the number is now past 8 million
-- of orphans that the AIDS epidemic has unleashed upon the world.
"What is worse?" asks Dr. Edward Mbidde, the chief
of Uganda's Cancer Institute, and one of the countries medical
leaders, "to let a baby die of AIDS when we can save it,
or to let the baby into the world just to become an orphan in
a society that has been overwhelmed with death? I have not yet
run into anyone who is qualified to answer that question."
Nobody has. But like everywhere else, people in African villages
don't normally choose death when life is even remotely possible.
Many rural families are large -- the birth rate here is still
higher than in most other places in the world -- and the concept
of family is defined very broadly.
"Children is what villages in Africa are for," said Eelin
Berdall, the mother superior of the St. James School, a rural private
school deep in the bush of western Zimbabwe. "When people start
asking questions about whether it's right to have children under
certain circumstances, they are just thinking Western. Nobody
here would ever think that way. Here, if somebody is going to
die, then their mother, father sister or brother will want children
to remember them."
Mrs. Berdall, an Anglican, has been a leader in trying to
help get AIDS drugs to pregnant mothers and in trying to help
people think of families in unconventional ways.
"Here the child belongs to the family, it is the vehicle
of the tribe" she said. "If we can save a child, we have to
save a child. And with some very strong effort, we can
save millions."
Dozens of youngsters are playing behind her in the baking
midday sun. Some of them walk barefoot distances up to 10 miles
a day just to attend the school. Their brown cotton uniforms are
donated by a variety of groups. The vaccines they receive are
donated by the government and by the World Health Organization.
Their food is brought by concerned friends and neighbors. Mrs.
Berdall summons a teacher to join her.
"This woman's sister just died of AIDS," the mother
superior said matter of factly. "She left five children."
Sulfina Dube, 39, nods slowly. Her sister was one of the few
women in this part of the world who could afford formula, and
who lived in circumstances where it could be prepared properly
and regularly. "My sister understood that it was her only
chance to save her baby," said Miss Dube, who now looks after
Celie, the youngest of the five children orphaned when her sister
died of AIDS this year.
"There was never a minute when any of us wondered whether
it was right for Celie to be born, or to survive. How could you
even ask something like that?" Others wonder how you cannot.
"What we are really asking many women is do you want
your baby to die of a horrible disease or do you want him to starve
to death?" said Sophia Mukasa Monico, the head of TAOS, Uganda's
unique AIDS support organization.
TAOS has 27,000 clients and not one of them receives drugs
that are considered routine in the West.
"Is it ethical to bring a baby into this world in that way?
Nobody will ever answer that question. We certainly are not
going to stop people from having babies. And it's wonderful that
there are ways to treat those children and protect them. But let's
not look at formula or a few AZT pills as an answer.
It's really just a question: Do women who don't breastfeeed
want to bring orphans into this world? Or do they want to risk
killing their children by caring for them? We're used to death
around here. But this is a choice only Idi Amin could have made."
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