Jill Seaman Stops Kala Azar and Saves the Nuer

by William Dowell
[This piece ran in TIME's Heroes of Medicine, 1997]

Jill Seaman makes her rounds in southern Sudan

Aviation maps list Duar, a  sprawling  agglomeration of African huts called 'tukuls,' as  "Dwil Keil," the 'lone house. The name is an ominous reminder of the recent past.

Not long ago, Duar, in south  Sudan's Western Upper Nile province,  found itself at the  epicenter of one  of the deadliest and least publicized  epidemics to hit Africa this century. Of the more than 1,000 original inhabitants, only four were left alive.  And that was just the beginning. More than 100,000 people  died in the  surrounding region. The Nuer, south Sudan's second largest tribe,  faced  certain extinction.

     The cause of this destruction  was kala azar,  scientifically known as visceral  leishmaniasis, a deadly  parasitic protozoa  only slightly larger  than ordinary bacteria, and carried by the bite of a sand fly that is less than 2-mm long.

    Even by African standards, kala  azar is a frightening disease.  It coats itself with a protein that makes it inoffensive to the body's defenses and then invades white blood cells. Its host's immune system is left in a shambles.  To make matters worse, kala azar stimulates bone marrow to produce white blood cells so rapidly that they do not have a chance to reach full strength and are unable to defend themselves against disease.  Usually, a second  infection, such as  pneumonia, malaria or  anemia, brings painful death.

         If it had not been for the single-minded, and often heroic, intervention by the Dutch branch of  Medecins Sans Frontieres  (Doctors without Borders),  Sudan's epidemic of kala azar might easily have turned into a modern-day version of the Black  Death,  the plague, which  ravaged  Europe in the middle  ages.   MSF was not only largely responsible for bringing the epidemic under control, but in the process it redefined how medicine is done in the field. 

        The driving force behind this effort was an unassuming, but iron-willed young  American woman from  Moscow, Idaho, Dr. Jill  Seaman. Her  previous specialty had been providing public health to Yupick Eskimos in the Alaskan  bush. In an eight-year struggle against kala azar, she developed more clinical expertise with more patients suffering from the disease than any other single doctor in history.

      The disease Jill Seaman battled is not new. Kala azar ravaged much of eastern  India in the last  century, where it earned its name, which means   "black  fever" in Hindi.  In 1901, a British  physician, Dr. William Boob  Leishman,  developed a  stain to detect the  parasite  with a microscope, and Dr. Charles  Donovan showed that specimens could be  extracted directly from the spleen. The parasite is  now called Leishmania donovani in their honor. Variants of leishmaniasis are found in southern Europe, South America and even Texas.  A complex treatment involving daily injections of  a toxic heavy metal,  pentavalent antimonial, which is marketed under the trade name Pentostam, has  been  available since the 1930s. But kala azar continues to fascinate medical researchers. Parasitologists often become so obsessive that they  call themselves Leishmaniacs.

       Although the epidemic in Sudan involved a disease that was already well studied, the reaction to it in Sudan was delayed because few of the people who came in contact with it in the field had enough medical knowledge to recognize what they were seeing.  The western Upper Nile is one of the most remote areas in the world. It has almost no roads. The Nuer tribesmen who populate it, have little contact with the rest of the world.  To make matters worse, the fundamentalist Islamic government in Khartoum, engaged  in  a civil war with the black Christian and animist  tribes of the south,  showed no interest in  stopping a disease that might prove more effective at quelling  rebellious tribes than sending in armed troops. In 1988 when the epidemic was just beginning to spread, Khartoum banned relief flights into the south, and the UN anxious to keep some rapport with Sudan's increasingly erratic government, asked all western relief agencies to stay out. As late as 1992, a World Health Organization representative in Khartoum tried to argue that no epidemic had ever existed.

     MSF was one of the few organizations that refused to listen. MSF already had a medical team in Khartoum.  In the summer of 1988, it sent a second team clandestinely  into the south.  In the spring of 1989, the team began to hear reports of a strange new  "killing disease."  MSF doctors in Khartoum  thought it might be kala azar. They had already  begun treating several hundred Nuer tribesmen  who had fled north to the capital.

        By then, Jill Seaman was attending  classes at London's School of Tropical  Medicine and  Hygiene.  Four years earlier, she had taken a break from her job with  Eskimos to work with  Ethiopian refugees at  a camp in Sudan. She was frustrated by the lack of microscopes at the camp, but she also realized that even if she had had one, she wouldn't have understood what it was that she was looking at. She needed more training, and London was recognized as the place to get it. It turned out that she loved the classes. When MSF came to the school looking for a doctor  to take on kala azar in the bush, she signed up immediately.

       There had been a debate inside MSF as to

whether kala azar could be handled in the bush on the scale  that the Sudan operation was going  to require.

   "Kala azar had always been treated in  hospitals, and then only a few cases at a  time," says Johan Hesselink, who headed  MSF-Holland's south Sudan  operations during that period. "We were going to be dealing with thousands  of patients at a time, and we  didn't know if it  would be possible to do  this out in the open and under a tree."

     When she finally reached Sudan, even Jill Seaman wasn't sure what she had signed on for.   "My legs swelled up to twice their size with mosquito bites," she says,"and I was  ready to cut my  contract short by 11  months."   But she was clearly captivated by the place and by the enormity of the human catastrophe. "If you witness a tragedy like that, how can  you not be  moved?" she says. "Where else in  the  world could 50% of a population die without  anyone knowing? "

     The first step was to find out exactly what the disease was doing. The team had set up operations in a village called Ler, several days' walk south of Duar, the center  of the epidemic.  Jill Seaman and  a  handful of Nuer staff began to explore on foot to the North.  What they found was chilling.  In some villages, cows wandered unattended. The entire human population had died. The Nuer who did survive looked like walking skeletons.  Sick children carried starving babies after their parents had died on the road.

   "Everywhere I went, people were  dying of kala azar," Jill says. "I was certain that we had a serious problem."

    The level of infection from villagers was  so high,  that one lab changed its readings of blood tests  because it didn't believe the results it was seeing  were possible.

     With the infection rate increasing, Jill asked for an entomologist to pin down the vector. MSF sent Judith

 Schorscher, a  Canadian, based in Paris. She spent six months with  special  boxes equipped  with fans designed to suck insects into  traps where they could be dissected and analyzed.  Volunteers agreed to be bitten, while Jill and the others trapped the insects in small blow-pipes, killed them with a puff of cigarette smoke and dissected the infected organs under a microscope.

   It soon came apparent that the vector was the female sand fly, phlebotomus orientalis,  found in the region’s vast acacia forests. The tiny insect can only fly 200 feet a day and to a maximum height of 6 feet, but it had begun to encounter refugees escaping into the  forests from  areas where kala azar  was already endemic. The parasite  multiplied in the pharynxes of sandflies who had bitten an infected person. The sand fly was immune, but the parasites multiplied so quickly that they eventually nearly strangled their host. When the sandfly tried to bite its next victim, it cleared its throat by spitting  a small plug of parasites into the wound it had just opened. Only this time the human victim had no natural resistance to the parasite. The cycle amplified the disease with victims and  sandflies receiving stronger and stronger doses as the parasite encountered fresh hosts.

       After the early surveys, Jill Seaman was  determined to set up  operations in Duar.  Johan Hesselink,  MSF's country manager at the time thought she was  crazy. He would never  be able to get a plane in  to evacuate the  staff in the event of trouble. Jill  went over  Hesselink's head, and  appealed to MSF's managers  in Holland.  Hesselink was furious, but  eventually he had  to admit that she was right. He warned Jill that if she ran into trouble, she  might  have to walk out on foot.   Flights were often spaced up to six weeks   apart. Cargo on the planes was so limited that the staff frequently had to decide between  food and  medicine. "We saw relatives losing weight because they were giving  their food to sick  family members," says Sjoukie De Wit, a  Dutch nurse who became  Jill Seaman's sidekick. The doctors decided that they did not need to  eat  that much, when the Nuer were starving.

        There were plenty of reasons  for feeling emotional stress.  The original MSF site at Ler was bombed on Christmas day in 1989 while Jill was still there, and again  in  October 1990 after she had moved to Duar. She got the news of the second bombing by radio  from a pilot  who was  evacuating all but two expats from Ler. Then the radio went dead.  "I guess you felt kind of isolated," she says. Khartoum went on to bomb every relief site  in  the south that year. The message was clear, but the rebel forces  were not much better.  In November 1991, Ler was overrun by an opposing faction.  Jill watched as rebel troops moved  through Duar on their way to Leer. "You saw  naked men running past with guns and  artillery  on their way to the battle," she  says. "We  could hear gunfire in the  distance."  By then,  the team had 1400  patients in Duar and another  600 in Leer. MSF decided  to evacuate  Duar. The plane landed at sunset and was  prepared to take off at 4 a.m.  Jill  began writing instructions for the Nuer staff to carry on  the  hospital alone.  Thousands of tribesmen stood on the runway. She expected bitterness at the desertion and even to be physically  attacked. Instead, the Nuer sacrificed a cow to thank her.

   The Nuer, named  Jill "Chortnyang," the 'brown cow  without horns,' because they knew she hated  violence.  Sjoukie, a pragmatic and cheerful slender blonde, became "Biethyang," a great  cow with red and white spots.  The MSF plane became "Nyabobka," the blue cow, because of  the blue stripe that ran along its fuselage and  because the Nuer knew that it brought the medicine that was saving their lives. Says Hesselink,"When the Nuer give you the name of a cow, you know that you  have done something right and that they  think you are pretty exceptional." 

    In February 1992, MSF received  reports of barges   carrying troops on the  river near Duar.  By  then, Jill was trying  to cope with simultaneous  outbreaks of  meningitis, measles, and at least  900  patients suffering from kala azar.

   A plane  was diverted to evacuate the team.  The  aircraft, built to carry seven passengers, took off with 11 on board.  Jill remembers sitting on the floor of the  plane squeezed in between the other passengers,  tears  steaming down her face as it roared  down the  field and took off between rows of banana trees. She could not get the images out of her mind. "I  kept seeing thousands  of people standing at my  tent, saying 'I am dying, Jill, what do I do?"

      In January 1994, Jill was working until  11:30  p.m. in a tukul processing blood  tests for kala  azar. Gunfire erupted in the camp and a woman  threw herself on top of  Jill.    She had the mouth of her baby jammed  against  her breast to keep him quiet.  A three year old  child outside the hut  had been shot in the  back, his intestines  splayed across the  ground.  Jill tried to operate, but it was hopeless. The next morning, MSF diverted a  plane to pick up the doctors. When it landed, soldiers  suddenly appeared, scattering the Nuer in panic.

      Jill recalls being so exhausted that she was nearly  oblivious to what was happening. The soldiers, it  turned out, were  guards sent to protect the plane. They stopped in Ler so that a tube could be inserted in the chest of a wounded  villager.  Then they went on to Nairobi.   Jill  and Sjoukie took two weeks off to  climb Mount  Kilamanjaro.  Jill suddenly  realized that she  could no longer sleep in  a room alone.  Yet after  four months back in  the US, she was back in  Africa.  She walked into a village, and gunfire erupted  again.  "I remember crouching next to the  wall of a hut," she says," asking myself  over and over, what am I doing here?" It  turned out that a wedding was taking place  in the next village. The local commander was so startled by Jill's reaction that he  had the groom placed under arrest.  After  that,  strict orders were issued not to fire  any weapons when Jill was around.

     Her  biggest problem was a  sense of personal helplessness.  "I remember someone saying,'Don't  worry, Jill is  here,'" she says. "But I still  couldn't do  anything."  In fact, she was doing everything.  "She did not just treat patients,"  says Marilyn McHarg, the current country manager for MSF-Holland in Nairobi.  "She designed the  protocols and the system  for the treatment." Just finding enough drugs was a problem. Marilyn  McHarg remembers scrounging  Pentostam on several  continents.

   "We found some in  Canada and some  in Belgium," she says.  "Walter Reed hospital had only 20 bottles."

     And kala azar, itself,  was not the only problem.  One day the neurotoxic effects of the Pentostam drove a  patient mad and he threw a spear through another  man's chest. Jill operated in the open and saved the man's life. Then she and Sjoukie operated on a man so riddled with tropical ulcers that his bones were exposed. A UN official had to turn away, unable to look. 

       Johan Hesselink  remembers just having taken off from Niemne at 6 p.m. as the sun was  setting, and getting a call  from Jill  ordering him back to the field because a  woman had complications in childbirth and  she  didn't have the proper equipment.  "I  told her  it was crazy. It was too late.  We would crash,"  says  Hesselink. "She made me do it anyway."  At Leer, the Nuer lit fires  along the runway so  the plane  could land in the dark.  Hesselink  flew back  to Niemne the next day with the mother and  two newborn twins.  Cheering crowds stood along the runway as the plane landed.  "Jill really  cares," says Hesselink, "but  we are in this  business to care."

      By late 1995, it looked as though the  epidemic in the south Sudan was  beginning to enter its endemic phase.  Jill and  the MSF staff had treated more than  20,000 patients.  Once treated,  they were  likely to remain immune to the disease.

    The price of stopping the epidemic was  high in  human terms as well as the more  than $1 million  a year that MSF-Holland  poured into the  operation.  Of 70 Nuer and  Dinka nurses trained  by Jill and the other  MSF doctors, more than 75% came down with  kala azar. Five lost children to  the  disease.  Jill tested positive to the parasite herself. A skin patch produced a  scar  40 millimeters long, when 5  millimeters  indicates infection. But the disease never materialized.

     With the crisis coming increasingly under control, MSF and other relief organizations based in Nairobi began to  rethink their role in Sudan.   The "hands on" approach of providing medical aid directly to Sudanese is now coming under criticism for building a dependency on outside help.  The new approach calls for outside agencies to step back and let the Sudanese develop their own resources. In this new climate, some see Jill's eagerness to help as almost counter productive.   Hesselink says that in 1995-96, Jill  faced a brief mini-revolt by other expat staff members  who  insisted that patients only be  seen during  normal working hours.  When  Jill continued to see her own patients after hours at night,  she was ordered to stop  and bluntly informed that she would be sent  home on the next plane if she  continued to  violate the new rules.  She was briefly  banished to Nairobi until MSF recalled its country  director and let her go back to practicing medicine.

      But the atmosphere has clearly changed.  A few  weeks ago in Duar, when Jill examined a baby dying  of tuberculosis, the rest of the MSF team balked at providing treatment even though there was medicine to save its life.  The team, headed by a Kenyan lab technician argued that it needed two weeks to launch a comprehensive TB program and that it could not afford to make an exception just for one child who was dying. It was the kind of argument that Jill Seaman has trouble accepting. "In  two weeks," she said gritting her teeth, "that Baby will be dead."  But a tense  three hour meeting of the MSF staff voted against  making any exceptions to its schedule--even if that  meant condemning a child to die.

         The "hands on" vs. "hands off" issue is a hot topic in  Nairobi, and it is obvious that few expats can keep up the frenetic pace of someone like Jill Seaman. "Doctors have a  right to sleep too," says Stephanie Maxwell, MSF's  current medical coordinator in  Nairobi, who holds a graduate degree in nutrition. "There are doctors who have been in a post for six months and are convinced they are doing a great job, and then Jill comes along, and in comparison it looks like they haven't done anything."   But the issue of doing more than emergency medicine is something that relief managers take seriously.   Says Marilyn McHarg,  MSF's current  country representative, "If we  pull out of  Sudan tomorrow, we would like to  know that  we are leaving something behind that lasts."

   Hesselink acknowledges the arguments, but disagrees with the conclusions. "The problem," he says, " is that the Sudanese don't do more,  and people die."

     The Nuer are clear on where they stand in this debate.  Chief Tongwar, one of the areas  most  respected head chiefs told a recent council meeting,  "Jill is like  me. What I think, she knows. "  Then he added softly, "If you did not come here, Jill,  everyone would have died.  We have named  many of our daughters 'Jill,' Now we will also name our  sons, 'Jill.'"

        When Chief Tongwar had spoken, Chief Elizabeth, spokeswoman for the women of Nhiadhiu stood up.  "No other doctor came to us," she said,"only you, Jill."

         As long as she is allowed to continue,  Jill Seaman shows no sign of taking a step back in confronting human misery. "We all make choices," she says,"sometimes you can decide to do one thing, and to do that one thing really well." Marilyn McHarg, MSF's current country manager, seems to appreciate Jill's  special talents and  has now assigned her, Sjoukie De Wit and another  doctor to a flying satellite team that roams from  village to village treating kala azar and TB.  TB is now a special problem because kala azar has so weakened the Nuers' immune systems that the follow on infection is often fatal.  In  August, Marilyn  dispatched Jill to Ethiopia to survey a  new outbreak of kala azar. She is also working on a  pilot project to introduce a drug for kala azar that  will cost a tenth the price of Pentostam.

       But it is really the work with patients that captures  Jill.  A few weeks ago, she  set up a new  camp in  Manenjang, where the airstrip was so overgrown that the pilot was terrified of landing.  On her own once again she seemed in her element.  There was no one to hold her  back from healing the sick.  That night, a woman  walked into the  new  camp with her 11-year old daughter  near death  from kala azar. Jill shook her head. "She has extreme respiratory distress," she said.  But against all odds, Jill tried to save her anyway.  At midnight, Jill was rummaging through the tent looking  for drugs to resuscitate the  girl.  In the  morning, despite the efforts, the girl was dead.  The mother squatted next  to the  tukul wailing.  Her  right  hand raised trembling in the air and then  she  grasped her thigh as though desperately trying to  hold on to her own body.  She repeated the gesture  over and over.  In the immensity of her grief, academic discussions of relief strategies in Nairobi seemed nothing less than a trivialization of human destiny.   "This was her last child,"Jill said. Then Jill squatted next to  the mother  and whispered in Nuer, "My heart is in  the  earth."

      The next night at around 10 p.m, a loud flailing sound erupted outside Jill's tent.  A mother was desperately trying to revive her 8-year  old son  in the last stages of  cerebral malaria.  As I watched, I  thought this would be another hopeless case. The boy was slipping into and out of consciousness.  The mother, pounding on his chest, looked as though she would beat him to death in her desperation to keep him breathing.

     Jill bent down to get closer.  A swarm of mosquitoes  descended on her ankles and arms in an African feeding frenzy.  Ignoring her own discomfort, she prepared an IV. The boy's  blood  pressure was so low and his arms were so thin  that she could not find a vein.

   With a Nuer  nurse holding the boy tightly,  she jabbed the IV into his arm, and then  dissatisfied, pulled it  out. "It's not  right," she explained. The boy  writhed in  agony. Calmly she inserted the  needle four  or five times more before she was  finally  sure that she had it right.  At 2 a.m.  she  ducked back into the boy's tukul to give him more  medicine.  In the morning, by some miracle he was alive and smiling.  The  Nuer mother beamed at Jill, and then she was gone.  Jill sat down at the camp table outside her tent, poured herself a cup of tea and began preparing herself for her morning patients.

      The next big epidemic in Sudan looks like it will be sleeping  sickness. The trypansosome parasite that causes it is a distant cousin of kala azar. Infection rates in some villages in Equatoria just south of the Western Upper Nile are already running at 20%.  Experts  question whether it can be treated without hospitalization--an option which because of the enormous numbers is clearly out of the question. It is the kind of impossible field medical problem that is tailor-made for Jill Seaman, and she has already indicated that she'd like to get  involved,  if the  decision makers in  Nairobi get around to asking  her.

       In the meantime,  Jill has the consolation of knowing that she has  saved a tribe in Africa as well as its way of  life.  "We used  to fly over here and there  were no tukuls," says Johan Hesselink. "Now  there are tukuls  everywhere. These people  have come back because  they see a future.  That is what life is about."  It is no small  achievement for an unassuming American girl from Moscow,  Idaho.

--Southern Sudan, 1997