“No, Sudden Infant Death Syndrome (SIDS) does not exist in Indonesia.” I’m in the office of Dr. Bob, as he is referred to by his young patients, in one of the most modern high rises in Djakarta, Indonesia. He is assuring me—with absolute certainty—that what causes death in 2,500 babies each year in the United States does not occur in Indonesia.

His black, dyed hair conceals this Chinese pediatrician’s age: deep in the sixties, I guess. While I talk with a white-coated junior doctor on his team, I see him grab a book and look up the diagnosis. Is his certainty premature, I wonder? “Let’s have a conference call with my colleague who heads the department of Pediatrics at the University,” Dr. Bob volunteers. I hear that colleague say: “I have not encountered SIDS either. It’s probably because mothers in Indonesia are always with their babies; they even sleep with them.”

The junior physician, a woman has heard of SIDS. “It has something to do with obstructive apnea?” she queries me. But she hasn’t seen a case either. I am not surprised. After talking with almost a dozen physicians in Indonesia, with numerous contemporary and traditional midwives, and more than 40 mothers, only one physician recalls a premature baby once about five years ago who might have been a SIDS case.

During half a dozen trips in the 1990’s to Indonesia’s larger islands, Sulawesi, Sumatra, and Kalimantan, I have come across unique birth and death rituals for infants. In Toraja, for instance, babies who die before their teeth break through used to be buried in a slit made in a kapok tree. “Their pure spirits can rise with snake-like movements upwards, unobstructed, to the heavens,” Stanis, my Indonesian collaborator tells me. Mothers of SIDS babies in the US have begun to plant trees in their memory. This symmetry intrigues me. Now that I am retired, I want to document some of these rituals.

During my graduate school days, I felt fortunate that, unlike my neuroscientist brethren who studied rats and cockroaches, my research was with babies and mothers grieving deeply when their babies died. Surely, I would see the solution to this tragic disease. Ultimately, my 40-year career has been devoted to the enigma of SIDS. My quest for infant rituals has now come to match my search for the cause of SIDS. I haven’t given up.

In developed Asian countries such as Japan, the rate of SIDS is low. If the SIDS rate were also low in Indonesia, a developing country, parenting could reveal the reason why. After my initial encounters I’m forced to conclude that SIDS as a diagnosis seems unfamiliar. In the West, the speculation about why this is, is twofold: that the occurrence of SIDS is obscured by the high rate of overall infant mortality and also, that the diagnostic criteria are not recognized. Would there be another disease that masquerades as SIDS?

I have questioned myself about my motivations. In October of 2006, I am scheduled to have a hip replaced. The pain doesn’t stop me from traveling to Indonesia in the spring of that year. Am I testing my mettle? Is this solo trip the sort of attempt to remain “young” that other women seek in facelifts and tummy tucks? Will I still be up to the strenuous demands of traveling in the remote rainforest? Right next to mettle is the question of independence. Is this project a last hurrah and proof of competence at 67?

*****

The research questions require finding an Indonesian collaborator. Stanis who agrees to be my collaborator is around fifty. He hails from Toraja, Sulawesi and received his Ph.D. in Anthropology from the University of Chicago. I am fortunate he answers my query. He knows about the rigors of Western research.  Many anthropologists from across the world have studied the culture of Toraja, but none know it as well as Stanis. Besides teaching at Hasanuddin University, he directs a tour company.

Clan houses called tongkonan, and their adjacent rice barns, smaller but of the same shape, dot the mountainous terrain in Toraja.  These classical, mahogany painted structures have imposing thatched curving roofs that on either side turn heavenward. Every part of the structure is decorated with symbols of fertility, masculinity and femininity. Torajan’s elaborate funeral rites, derived from their traditional religion Aluk-to-Dolo, draw relatives from all over the world and can last for over a week.

Makale and Rantepao, the largest towns, boast two hospitals each. Community health centers (puskesmas) staffed by bidans (contemporary midwives, trained in western medicine) are spread across the district. In the smallest desas (hamlets), there may be only monthly well-baby clinics (posyandu). In areas that are reachable via potholed asphalt roads, forty percent of pregnant women either deliver their babies at home alone or with the assistance of elderly traditional midwives called dukuns or to ma’ pakianak. The remainder seeks out a public or private health clinic or a hospital in one of the large towns. In remote areas that can only be reached on foot, virtually all women have at best a to ma’ pakianak in their village to assist with the delivery.

The traditional midwives in Toraja have lost some of their prestige since the government has discouraged their independent operation as healthcare providers.  In rural areas, however, no attempt is made to prevent them from working.  Such an ordinance would spell disaster.

*****

“What are some causes of infant death here in Toraja?” I ask Stanis’ wife, Katrin. We are waiting in line as usual for a signature on a document. “Mata Tinggi, “she answers promptly. “It’s when the babies’ eyes roll up into their sockets. Yelling and noise around babies can do that, and they die. I always put a small sarong or pillow on my baby’s chest to make it weigh on the heart. I also gave my babies (she has four teenagers) a spoonful of black coffee in the morning to prevent Mata Tinggi.”

I suspect that she is talking about a seizure. “Many people hang a string of dried ginger around the crib to prevent spirits from whisking the baby away—that’s because baby blood smells good.”  Without having necessarily heard of SIDS, Katrin mentions something extremely relevant: “In our tradition you never place the baby on the belly, always on the back, especially during daytime. You have to keep the place around the baby clear and put a small pillow on each side of the baby’s head so that it remains in place and the neck doesn’t extend in a funny way”—and she shows me a turned head extension that might compromise the airway.

****

Getting the necessary permits in Indonesia requires a ten-day detour through Djakarta and Makassar. This endeavor becomes Kafkaesque in its difficulty. For several days I crisscross the metropolis in a taxi, from the office that oversees the research of foreigners in Indonesia to the government headquarters of Imigrasi, Polisi and Human Affairs. It soon becomes clear that one visit is not enough. I drop off envelopes with papers and forms in triplicate that forces letters to be prepared and signed by designated officials. These individuals are not available, perhaps praying away from the office; the printer to issue the next letter is not working; or the size of my passport photo does not fit the outline. Stanis and his wife Katrin patiently coach me to face it with a level of equanimity that is foreign to me.  Once all the paper work is complete, the doors in Toraja swing wide-open.

****

There are still some remnants of a feudal system in Toraja; nobility is one of them. In a family of noble descent, a baby boy had died several years before. “Since you are interested in SIDS, perhaps you want to interview the parents,” Stanis suggests. It is rumored that soon after birth the boy had been put in bed with his maternal grandmother, who inadvertently rolled over him.

“That sounds highly implausible,” I think to myself.

There is an ongoing, heated debate in the West about the wisdom of bed sharing.  Some studies show a higher incidence of SIDS in infants that sleep with their mothers. My anthropologist friend, Jim McKenna at Notre Dame University has argued that among the great apes, co-sleeping is normal and even in our own Western history we only need to go back a few hundred years to find co-sleeping of mothers and babies in virtually all households. He speculates that the trend toward sleeping apart–even in separate rooms, may have resulted from a western ideal of individualism and autonomy.

Stanis recommends Damita as my translator, a diminutive mother of two, whose husband is a teacher and who herself runs a small warung (little shop) at the open-air market in Rantepao. One Sunday morning we set out to meet this noble family in their home.  They have been told why we are visiting. The head of the household spreads out a woven mat on the floor of an elevated rice barn—it is the typical open-air parlor where Torajans receive their guests. The compound overlooks a valley with pine trees on distant mountains. Shyly, his wife brings us glasses of tubruk, coffee with grounds on the bottom. As soon as we ask what happened to their infant, she tells us without any reluctance that the baby had been born with the help of a dukun and died less than 72 hours later. Compared to her other births only one thing stood out:  Hardly any water emerged with the baby.

Hearing about the lack of intra-uterine fluid, my immediate hypothesis is that this little boy’s lungs suffered and he died of lung failure, a reasonable explanation. I mention this to the parents. The mother, however, has arrived at her own explanation. During her pregnancy her mother-in-law had died. This woman adhered to Aluk-to-Dolo and used herbs and spells. She foretold that if the baby were a boy, he would die; if the baby were a girl, she would live. Therefore, the mother was not surprised to lose her baby boy.  Whatever interpretation I offer is essentially irrelevant.

*****

Driving back we pass large blue tarps spread on the side of the road full of pale coffee beans.  Women and children hang out in their yards.  They wash clothes or sift seeds to get rid of impurities. Clotheslines are full of infant outfits.  We have discovered that diapers, even improvised ones are never used. Boys lead buffaloes to the sawa (ricefield) where they tether them to poles in small mud baths.

None of these pastoral images, however, explain my sense of satisfaction. That feeling is brought about by moments of connection with women in the mountain hamlets. Upon departing her small house, Neh Desi holds my hand tightly and pulls on my hair as if to say we share our age. The to ma’ pakianak seems well into her nineties, although no one knows her true age. She can’t stop kissing me.

“What is she saying?” I ask Damita. “She wants you to stay,” she says.

And there is the meeting in the private clinic with Neh Uru, another to ma’ pakianak in her early sixties and bidan (contemporary midwife) Maria. In the stark delivery room with three vinyl-covered wooden beds and two baby cots, Bidan Maria proudly tells us that they can have as many as 13 deliveries each week.

On another day we interview a to ma’ pakianak who, gossip has it, occasionally performs abortions. Those are secretive affairs, not at all in line with traditional or contemporary religious practices. When we walk into her garden we see an elderly woman stark naked, having a mandi (bath) and washing her long grayish hair. She is disarmingly unselfconscious and when she hears that we want to interview her she quietly continues throwing pans of cold water over her head. We are invited to climb up to the veranda where she soon joins us after having flung a sarong around her shoulders. She is about eighty, her granddaughter tells us. Four small great grandchildren hang around quietly while we ask the same questions we have asked the other traditional midwives: “Have you ever heard of a baby going to sleep and not waking up?” Like everybody else we have questioned, she reacts with a definite “No, of course not.”

Damita then phrases our new question carefully: “Have you ever helped women who are pregnant but don’t want to be?” The old woman doesn’t skip a beat. ‘Yes,” she answers “when the fetus is still really small, I massage the woman until she aborts. But she assures us, “Only when the fetus is less than three months old,”

Later, when Damita and I sit down together to review the conversation, she reminds me that when I asked whether the midwife ever used any other means than massage to induce an abortion, she said “No.”  However, the grand daughter interrupted her in Torajan: “What about the juice of a young, unripe pineapple (pondan), grandma?”  Grandmother shushes and says sternly, “We don’t talk about that….”

*****

In this realm, I run straight into my biases. As an experienced anthropologist, Stanis exhibits both warmth and detachment but I can never tell from his demeanor what he thinks about the womens’ revelations. While he talks, I just observe and occasionally ask him to get a clarification.  After dozens of such interviews, I have learned enough words to get a gist of what is said.  It is a good thing I am not the one to interview.   “By your insistent questions, you reveal that you are upset, “ he reprimands me.

Indeed by talking with bidans (contemporary midwives), I have been appalled how young women don’t seem to have anybody in the regular health field to turn to in case of an unwanted pregnancy. Around the turn of the 19^th Century a cadre of missionaries arrived to convert the indigenous population from Aluk to-Dolo to Christianity; only about one in ten families is Muslim.  While TV pipes in shows from all corners of the world where young people enjoy great sexual freedom, the abortion taboo remains very strong.

One day we set out to visit a woman who is for helping young and older women in need of abortions.  I tell Stanis that I doubt that this woman will want to talk to us, but he dismisses my skepticism.  We find Gloria (not her real name) at home, alone.  It is Sunday and very quiet.  Her hair is neatly tucked up and she smiles broadly. Spontaneously aborted fetuses are typically buried on the south side of the house just as the placenta, expelled after the birth of a healthy baby, is buried on the east side of the house.    When Gloria was 15, an old man appeared in her dream who told her that “our creatures are being eaten by animals. Therefore, you must do this ritual: put three grains of rice on the ground together with eggs [so as to protect] three months old fetuses.”  She took this as an assignment to help women get rid of these fetuses from their bodies.

She doesn’t know her exact age, but from stories she remembers, “it was after the Dutch left the country, when the Japanese left a year later and the rice harvest was poor that year.” We conclude that was around 1947-1948; she should now be in her sixties.

She stresses that she only carries out her procedure, mainly massage, before the fetus is three months old, and only once she has discovered with her hands that the fetus is soft, and according to her, dead.  She uses some potions such as paria (bitter cucumber) leaves, a very bitter vegetable, to stop bleeding and a mixture of honey and egg yolk.  Her major abortifacient is a dark beer that women are instructed to drink for a several weeks, preferably at 4:00 in the morning. That same kind of beer can be used as birth control by drinking it before intercourse, she assures us.  It appears that yeast has been used since the middle ages to cause spontaneous abortions.

Once a young woman came to her who still had the branch of a Jarad tree in her womb.  She refused to give her a massage because she found some white material on the branch that warranted a doctor’s attention.  So she urged the girl to consult a doctor. Gloria’s practice sounds a lot more benign than the use of a tree branch to dislodge the fetus, a strategy reminiscent of the barbaric coat hanger used prior to Roe v Wade in the US.  I remember my own fright in the 1960’s when I accompanied a woman friend to Juarez in Mexico for an abortion. I am silently cheering Gloria on. She has never lost a woman despite the fact that she sees about 4 per months, she tells us. Stanis and I decide to be cautious regarding the veracity of some of her assertions.

Lasuna Mararang (shallots) dipped in coconut oil are typically used for massage.  Throughout our interviews with several dukuns we learn what they use in Toraja to induce spontaneous abortions: Daun Kelor (leaves from the horse radish tree) Kapas (bitter roots) and Pallan (castor oil).  Drinking tea made from red hibiscus makes the woman “slippery” so that the fetus and also the baby come out easily.

*****

Of course, SIDS has nothing to do with abortions, but we need to find out as much as possible about women’s attitudes toward births and fetal, as well as infant deaths, before we understand the mortality data that official registries contain.

Intrigued by the answers of mothers, doctors and midwives, I return to the US with a dogged determination to follow up this initial question: “Is SIDS indeed rare in Indonesia?” In the intervening year I recover from hip surgery and obtain from my own university, and from the Indonesian government, the requisite permissions for research. The ready cooperation from my colleagues and the staff of the University surprises me. Every individual responds promptly to calls for assistance. It gives the project an unusual momentum.

******

If we want to establish a rate of SIDS, we need to know how many babies are born each year and how many die of known and unknown causes. Among the latter one we would expect to find SIDS. It soon becomes clear how naïve we are about studying infant mortality in a developing country. “Count on 45 percent of births not being registered,” Dr. Laura Guarenti, obstetrician and gynecologist from the World Health Organization (WHO) in Djakarta, tells me over the phone. “You probably should work with midwives to arrive at an accurate count.”

******

For the time being Dr. Guarenti’s’ warning does not dampen my enthusiasm, even though the effort to establish births and infant deaths will soon come to a grinding halt. It isn’t that no births are registered. Toraja is divided into 31 health districts; each with a puskesmas where bidans register the names of newborns and urge mothers to visit a monthly posyandu (well-baby clinic). The number of births is then reported to the Public Health Department in Makale, the obvious place to begin our search.

Two friendly middle-aged women in this office are in charge of the books and handwritten forms. They have collected a multitude of papers and notes that they try to reconcile in our presence. We continue to find discrepancies and inaccuracies. With every new “final” tally our confidence in the data diminishes. Dukuns we interview heighten our suspicion. They don’t register babies. They don’t even keep notes for themselves. So the suggestion that we work through them to obtain complete numbers turns out to be impractical as well.

*****

Accurate infant birthrates and infant and maternal mortality rates are essential, not just for the study of SIDS, but also for the assessment of the incidence of diseases and to determine the effectiveness of prevention strategies. If we can’t find accurate numbers, how can we estimate at least the magnitude of the error in reporting?

During one visit to a family in the village of Salaputti we stumble on an answer. We use the occasion to question the village chief how the health system works and how the village is organized. Within minutes, we discover that all the families are on lists: Catholics, Protestants, Pentecostals, Muslims and Aluk–to-Dolo. That means we can identify and interview all the married women in the village. Comparison of the numbers that the puskesmas sends to the Public Health Department in Makale, with those from interviews, will allow us to spot discrepancies and find cases that have fallen through the cracks.

Back in California for a few months, I receive permission from the University to revise the study and I return to Toraja, ready to tackle this question.

******

We decide to carry out the interviews first in Ratte Talonge, in the district of Salaputti, a semi remote village reachable by car and later in Puangbembe only reachable on foot.  On our way to Salaputti, we see two six-year old girls in their bordeaux-colored school uniforms walk hand in hand followed by two boys with their arms over each other’s shoulder. A chorus of cicadas makes such ruckus in a stand of Kapok trees that I wonder whether I’m suddenly hit with tinnitus.

Four local women are awaiting us and lead us to a little shack on the side of the road, the place where one of them, Martina, sells palm wine to the locals. This will be our classroom for teaching how to obtain information about births, infant deaths, stillborns, spontaneous abortions, and about who delivered each baby. The interviewers go out that very same day. They receive 5,000 rupiahs (fifty cents) for each form they fill out. I also provide reimbursement to research subjects for time spent. “You must pay them at least the price of milk,” one of my research assistants proclaims, and I can’t agree more. So the money I dole out, 10,000 rupiahs ($1.00) per mother, is spread among all women in the community

Later that week, I decide to accompany Martina to the area where preparations are being made for a weeklong funeral. The only way is by motorcycle. After fifteen minutes over mountainous dirt roads, we get there just before rain comes down in buckets, clattering on the metal roof of the temporary veranda that the men have erected. I can’t hear for the din, but Martina is not deterred and gathers the women around her; their tasks of preparing food and setting up guest quarters is interrupted anyway.

*****

“You ought to come for the funeral procession,” Martina offers a few days later.

“We might as well,” Stanis reasons, “Everybody will be there so we can’t work until this is over.” We each climb on the back of a motorcycle and set out to the funeral grounds.

Teenagers lead the procession with prized, white-spotted buffalos decorated with banners. Women family members dressed in the traditional red-woven clothes and tiara-like bands walk behind them; small girls, perfect miniatures of the women, follow. Then a long line of village women snakes its way down the trail. Together they hold a ritual scarlet cloth above their heads. It stretches for at least five hundred feet. Some women have children tight to their breasts. When I meet the women’s eyes and feel their vitality, I feel tears spring into my eyes. I recognize among them the four women whom we have trained. They are part of a whole that is much larger than this funeral procession, much larger than this village. They accompany the deceased couple part of the way on their journey to heaven where the latter will intercede for them and their neighbors in the village.

The ornate cylinders that contain the bones of the couple are carried in two miniature houses on the shoulders of men who shake them violently to ward off evil spirits. Later, the women include me in their ceremony by serving strands of just-cooked buffalo meat. They pride themselves on their generosity and culture.

When the serious slaughter of buffaloes and pigs is about to begin, I prefer to leave. Stanis, who took a spill on the way up, doesn’t want to risk my falling from a motorcycle. He proposes that we hike to our place of origin. He pushes a foot-length piece of hollow rattan into my hand, filled with palm wine. “This is tradition,” he says. We pass staggered rice-fields, filled with tufts of green spiky rice plants, a pointillist painting that promises a healthy harvest soon. I walk, wine in hand, in my cerise-lined black jacket, expressly chosen for this ceremonial occasion, and red-hiking boots complementing the outfit.

By the end of two weeks our research team has talked with 320 women. I discover that Martina immediately re-invested her earnings in additional palm wine to sell during the funeral.

After a visit to the puskesmas in Ratte Talonge to compare their records against the actual number of births related by mothers, we discover that the clinic data are conflated with estimates and targets. We now have reasonably accurate numbers of births and infant deaths according to the mothers, but these numbers are not close to the ones reported by the puskesmas. However, we have learned that the number of babies dying during their first year is not high. It is fair to say therefore that nowadays SIDS occurrence is not overwhelmed by high infant mortality. The records of four deceased babies cannot be found at all.  “They probably died high in the mountains in Puangbembe,” the bidans tell us. “Those deaths are not often registered.”

*****

We head for a week to Puangbembe, a hamlet in Simbuang that requires a daylong drive via Pare Pare, Poliwasa in the direction of Mamasa.  At the junction of Nozu we have to leave Stanis’ sturdy Kia behind and ride for two hours in a four-wheel drive to a small Inn that is the gateway for our five hour trek on foot to the chief’s house in Puengbembe.  I have brought along research materials, an extra blanket to hold off the cold at night, and food for us and our local women research assistants, who are yet to be selected and trained.

*****

We arrive at the house of the chief in mid-afternoon. Our arrival had been expected because our luggage had been dropped off earlier. I’m assigned a separate cubicle with a platform bed and a glassless window looking over an area where a dozen toddlers and children play. My male companions must sleep on the hard wooden floor of the entrance hall that doubles as a dining area where at night a cold wind blows through. I don’t envy them. In this same part of the house, sitting on the floor, we as guests will eat with the Chief and instruct our women interviewers that night. The bathhouse is outside.

The second large area of the house has a huge fireplace for cooking. This is where the women and children eat and where they weave the traditional cloth of Toraja—striped woolen blankets of primary colors that are sowed into a cylinder and worn draped over their shoulders.  The same red-striped fine cotton weavings that we saw at the funeral are woven in this remote area as well.

*****

Once Stanis, who a dozen years before performed his dissertation research in this area, informs the Chief of our research plan, three young women appear from neighboring houses, who are interested in helping us. Fairly soon, neighbors arrive to look the visitors over, including a toothless medicine woman, Pine, who invites us to come to her garden the next day where she grows vegetables and medicinal herbs. Later that visit, Pine, who is probably younger than I, proposes that I be her adoptive sister. She offers me the gift of a macadamia nut and an aromatic piece of wood, both helpful against stomachache, and two liters of unroasted coffee beans. Pine also suggests she give me a massage. She senses immediately that I have a peculiar left hip. “Sakit, sakit” she exclaims pointing to it—sick, pain? Afraid that she will begin a vigorous massage of the area with the titanium hip, I call out to Stanis to explain a metal hip to her.

*****

In Ratte Talonge, we have discovered that it is easy for interviewers to fill out questionnaires. Here in Puangbembe many elderly women do not know their age—since they were born before the time that such information was routinely written down. They typically have large families and some of their children have predeceased them. Questions such as who delivered the baby and, in case the child or adult died, where had they buried them, helped the women recall. In the adjacent hamlet, Kanan, another three-hour hike, no dukun is available.  Up until today, pregnant women deliver at home with the help of a husband, a neighbor or a family member.

While the interviewers go their way to obtain the data, we talk to two traditional midwives, and visit an adjacent house from which open verandah we can see the entire fertile valley with its four villages dispersed among green fields of rice plants. The traditional tongkonans are centered around a traditional worship center where Aluk-to-Dolo is still practiced. Eddie our driver takes it upon himself to go out to purchase some chickens for dinner.  That turns out to be a difficult task because during the last several weeks hundreds of chickens have been sacrificed to ward off typhus.

*****

One afternoon we stroll over an easy dirt path to Pine’s garden. Pine is considered a local healer, not a dukun.  She points out an array of herbs and plants with medicinal properties, for instance, an herb to foretell the sex of an expected baby. Unlike the dukuns, Pine is reticent about sharing her knowledge.  “She doesn’t want to risk losing her power with herbs by divulging her secrets,” Stanis explains.  Pine digs up a couple of kasava roots for our host, a local custom and sends us on our way.

*****

Our informants, mothers, doctors, contemporary and traditional midwives have never heard of healthy babies suddenly dying during sleep either in Puangbembe or Ratte Talonge. Mystery is attached not only to SIDS, but also to Mata Tinggi that is feared by every mother we have talked to.

In the Western world, SIDS is the sudden death of an infant that remains unexplained after a thorough post mortem and death scene investigation. Despite its uncertain character, this diagnosis paradoxically provides a sense of comfort to parents. For decades now we have lived with the scientific consensus that the cause of SIDS is unknown. At the most fundamental level this consensus is not so different from the Torajan idea of infant death. We learn to rephrase our question. We now inquire if they have heard of babies being taken away by spirits. The answer is “yes.” I suspect that some cases of Mata Tinggi may be SIDS in Torajan clothing.

We seek explanations in the context of our own culture.  Exposure to foreign cultures jolts us back to the sometimes arbitrary nature of our sources of understanding. I treasure the personal and scientific insights that my colleague, Stanis, and the people we encounter in these small hamlets, provide.