Stillbirth, Neonatal Death and Reproductive Rights in Indonesia

Abstract

Globally, newborn deaths account for two-thirds of all deaths in the first year of life and 40% of under-five mortality. As infant mortality declines, the proportion of neonatal deaths has been increasing because of the failure to address the causes. The data in this paper derive from a longitudinal study of motherhood and emotional well-being of women in Indonesia; 488 women were interviewed in late pregnancy, and 290 at six weeks post-partum. This paper reports on in-depth interviews with four women who reported a stillbirth and six who reported a neonatal or infant death. They were asked about their understanding of why their baby had died and the information, care and support given to them. The study suggests that maternal and child health clinics fail to protect and fulfill pregnant women's reproductive rights, specifically the right to information and care for themselves and their infants, informed consent, counselling and to be treated with respect. This can be achieved through training and education for health professionals and policymakers, and by educating women about their rights as patients. It is essential that countries with high infant and maternal mortality provide post-partum care that includes support for those who experience stillbirth and neonatal death, including information, counselling and home visits.

Résumé

Globalement, les décès de nouveau-nés représentent les deux tiers des décès pendant la première année de vie et 40% de la mortalité des moins de 5 ans. Si la mortalité infantile diminue, la proportion de décès néonatals augmente, faute de mesures. L'article reprend les données d'une étude longitudinale de la maternité et du bien-être psychologique des femmes en Indonésie; 488 femmes ont été interrogées à la fin de leur grossesse, et 290 six semaines après l'accouchement. L'article décrit des entretiens approfondis avec quatre femmes dont l'enfant était mort-né et six ayant déclaré un décès néonatal ou infantile. On leur a demandé si elles avaient compris pourquoi leur bébé était mort et les informations, les soins et le soutien qu'elles avaient reçus. L'étude indique que les centres de SMI n'observent pas les droits génésiques des femmes enceintes, particulièrement le droit à des informations et des soins pour elles-mêmes et pour leur bébé, un consentement éclairé, des conseils et un traitement respectueux. Pour remédier à cette situation, il faudra former les professionnels de la santé et les décideurs et informer les femmes de leurs droits comme patientes. Il est capital que les pays aux taux élevés de mortalité maternelle et infantile assurent des soins après l'accouchement qui épaulent les mères ayant eu un enfant mort-né ou un décès néonatal, avec des informations, des conseils et des visites à domicile.

Resumen

Mundialmente, las muertes de los recién nacidos representan dos tercios de todas las muertes en el primer año de vida y el 40% de la mortalidad en niños menores de cinco años. A medida que disminuye la tasa de mortalidad infantil, la proporción de muertes neonatales ha ido aumentando porque no se ha logrado prevenir y remediar las causas. Los datos expuestos en este artı́culo provienen de un estudio longitudinal de la maternidad y del bienestar emocional de las mujeres en Indonesia; durante el estudio se entrevistaron 488 mujeres en la etapa final del embarazo y 290 en la sexta semana posparto. Se informa de las entrevistas a profundidad realizadas a cuatro mujeres que dieron a luz un mortinato y seis mujeres cuyo hijo murió recién nacido o con menos de un año. Se les preguntó sobre su entendimiento del porqué murió su bebé y sobre la información, la atención médica y el apoyo que se les brindó. El estudio sugiere que en las clı́nicas de atención materno-infantil no se protege ni se defiende el cumplimiento de los derechos reproductivos de las mujeres embarazadas, en particular el derecho a la información y la atención médica necesaria para ellas mismas y sus recién nacidos, el consentimiento informado, la consejerı́a y el derecho a recibir un trato respetuoso. Esto puede lograrse mediante la capacitación y formación de los profesionales de la salud y los formuladores de polı́ticas en este tema, ası́ como el suministro de información a las mujeres sobre sus derechos como pacientes. Es esencial que en los paı́ses con altas tasas de mortalidad infantil y de mortalidad materna se preste una atención posparto que incluya apoyo para aquellas mujeres que experimentan un parto de un niño muerto o la muerte de su hijo en la etapa neonatal, ası́ como información, consejerı́a y visitas a su hogar.

Key Words:

• neonatal death
• stillbirth
• reproductive rights
• post-partum care
• maternal well-being
• Indonesia

The cry of a mother

With howling cries

Let go the fruit of her heart

Resigned to Thy God the Omniscient

(In memory of my baby, Andhika

Written by your mother, Mis)

First-Time mothers dream of the birth of a healthy baby. Regrettably, childbirth sometimes brings the opposite, causing grief and sorrow in its wake. Every year, millions of babies die in the first month of life. The neonatal death rate in less developed countries, 34 per 1,000 live births, is seven times higher than in developed countries. About 98% of these deaths–four million newborn babies per annum–occur in Asia and Africa and 65% in Asia alone.¹ An additional four million babies are stillborn. In Southeast Asia, Indonesia has the second highest neonatal mortality rate, 22 per 1,000 live births after Cambodia, 54 per 1,000, and neonatal deaths in Indonesia account for 50% and 35% of infant and under-five mortality, respectively.²

The Safe Motherhood agenda has been dominated by efforts to reduce maternal mortality and morbidity and provide a better quality of maternal health services and nutrition for mothers.^{3 4} Child survival programmes, meanwhile, have been dominated by efforts to reduce infant mortality and morbidity primarily in infants 1–12 months, from diarrhoea, pneumonia, measles, malaria, infectious diseases and HIV/AIDS, through early diagnosis and treatment, vaccination programmes and appropriate management.⁵ These have led to a dramatic reduction in infant and under-five mortality in most developing countries, but the rate of newborn deaths has changed very little. Globally, newborn deaths now account for two-thirds of all deaths in the first year of life and 40% of total under-five mortality. Recent reports indicate that among those who die in the first month of life, about two-thirds die in the first week, and of those who die in the first week, two-thirds die in the first 24 hours after birth.¹

As infant mortality declines, the proportion of neonatal mortality increases. Continued failure to reduce neonatal mortality will eventually result in stagnated infant mortality rates in countries that have successfully reduced post-neonatal deaths in the last decade.¹ In Indonesia, the most recent national estimate of infant mortality was 40 per 1,000 live births overall,² with significant provincial variation and rates as high as over 100 per 1,000 live births recorded.^{7 8} The Indonesian 2001 National Household Survey estimated that 35% of infant deaths were neonatal deaths. Neonatal deaths are mostly related to the health and nutritional status of the mother.⁶ Improving care for women is therefore pivotal in the survival of newborns.¹

In developing countries, cause of death is often difficult to determine; most deaths occur at home, and mothers and other family members are often reluctant to report them for economic, logistic, social or cultural reasons.^{1 8} Neonatal deaths are usually classified as either direct or indirect. Before birth, the two direct causes of death are stillbirths that occur before the onset of labour and those that occur during labour or delivery, the latter almost exclusively caused by lack of oxygen. The most important indirect cause of neonatal mortality is low birthweight, a weight of less than 2,500 grams at birth, which accounts for 40–80% of newborn deaths. In Indonesia, 8% of babies born each year have low birthweight.¹ The Indonesian data on neonatal death is complicated by the aggregation of infant and neonatal deaths, with all causes of deaths combined.^{6 9}

Programmes to reduce maternal and infant mortality have proceeded without concomitant attention to the social and psychological impact of neonatal and infant deaths on women and their families. In Indonesia, despite the high prevalence of neonatal deaths, the stories and experiences of mothers are rarely recounted and women who lose their babies are orphaned in maternal and child health programmes. This paper focuses on the experiences of Indonesian women whose babies have been stillborn or died in the first weeks after birth. While it cannot be said to represent all Indonesian women's experiences, it does highlight the issues some Indonesian women have faced when such a death occurs and the impact on their well-being.^*

Methodology and participants

The data presented in this paper are based on a larger interview-based cohort study on motherhood and women's emotional well-being in one urban and one rural area in East Java, Indonesia. In the larger study, a total of 488 first-time mothers were recruited through the nurse-midwives in 10 hospital-based antenatal clinics in public and private hospitals in one urban area and seven village antenatal clinics in one district in East Java. All the women who agreed to participate were initially interviewed in the clinics during the third trimester of pregnancy and 290 of them (60%) were successfully contacted for a follow-up interview at home at six weeks post-partum. Those not found had moved house or gone back to their family homes for delivery and post-partum care.¹¹

Of the women interviewed post-partum, ten reported infant deaths, of which four were stillborn, four were post-neonatal deaths (within 28 days post-partum) and two were infant deaths (after 28 days post-partum). In-depth interviews were conducted by the first author with these ten women at home at 8–10 weeks post-partum, at which time only three of them had been visited by their health care providers. The sequence of events leading to the death of the infant was explored, including what the woman was told or believed to be the cause of death, how she felt at the time, who gave her support and what kind, whether she was satisfied with the support and when she started to feel better. Permission to tape-record or note-record the interviews was obtained from all women. Interviews were conducted in Bahasa Indonesia and Javanese; women often used both languages to capture the complexity of emotion and experience.¹¹ Tape-recordings were transcribed, maintaining the lexicon shifts, and notes were typed up and expanded. The resultant texts were entered into ATLAS-ti program for qualitative data analysis. Thematic analysis was conducted using the two interview languages and in English. Pseudonyms are used in the excerpts from the interviews presented.

Socio-demographic characteristics and clinical predictors

The ten respondents who experienced the death of a newborn were married, aged 20–29 years old and from a lower socio-economic background as assessed by occupation, husband's occupation and living conditions. Eight were from urban and two from rural areas; the majority had completed 12 years of schooling. All but two were housewives; one was a full-time cashier in a supermarket and one a part-time computer instructor. At the time of interview, one woman lived in a rented room; one rented a house in a crowded kampung (urban village) and the other eight shared accommodation with parents or siblings.

Clinical predictors identified in seven cases of infant death included respiratory infection (1), abruptio placenta (1), mild pre-eclampsia (2), severe pre-eclampsia with a very low birthweight (1200 grams) (1), and low birthweight of 1600 (1) and 2400 grams (1). The remaining three pregnancies had gone to full term, birthweight was >2500 grams, and no antenatal complications were identified.

Limited understanding of the reasons for their loss

“I don't know for sure (why my baby died). I thought she died because I ate or drank the wrong food, and I kept asking myself, Why did I drink that cough medicine? ‘Why did I drink that soda?’ But I asked the nurse about taking medicine, and she said it was all right.” (Lilis, 24)

Women were often confused about the cause of miscarriage or infant death. When asked about what had happened to their baby, they often referred to the fact that they had never been pregnant before and therefore lacked knowledge about pregnancy. The majority (8 out of 10) reported wanting but not receiving adequate information regarding their condition and their babies' condition. Three women believed that their babies had died for clinical reasons, i.e. abruptio placenta or infection. The remaining seven were not sure of the causes nor were they given adequate information about cause of death by the health care providers. This lack of information resulted in a range of non-clinical assumptions and beliefs about the death, with women blaming themselves for being ignorant, negligent or incompetent. Others believed that their loss was a nemesis or a consequence of past misbehaviour.

Lilis did not know about danger signs in pregnancy, so she did not present for medical attention that may have resulted in a better outcome for her and her baby when her membranes began to leak at seven months. After the baby's death, the nurses told her that the baby had died because her uterus was dry and the baby had been strangled by the umbilical cord.

“When I was seven months' pregnant, my waters came out, just like having a period. It wet my clothes. I did not know it was the waters. I told my neighbour about it and she said it was the waters. But she said it was all right and that she had also experienced it during her last pregnancy. I did not go to the clinic to have it checked.” (Lilis, 24)

Rina, aged 20, had received no meaningful information to help her understand her baby's condition, nor had she been involved in the decision to transfer the infant to the neonatal unit. She believed that her baby's health had been improving and that he was being well cared for. Moving the baby to the neonatal department, she believed, had made him ill. A few hours before he died, she found him in a crib surrounded by ants. This reinforced her belief that he had been neglected by the nurses in the neonatal unit.

Three of the women were diagnosed with pre-eclampsia. None was familiar with the term; instead they referred to the condition as darah tinggi (high blood pressure) and did not realise that pregnancy-related hypertension was different. Mis, one of the three, had not been told she had this condition, and only found out about it accidentally when she saw it in her medical records as she was paying the hospital bills. She believed pre-eclampsia was a problem within her womb and that her baby had died from it.

“Why did no one mention this to me? What did the term mean? I was going to ask but… I was in pain… and how could I ask? I did not even have time to think. My family was never told about this either… On my health record, there was a stamp saying resiko tinggi (high risk), but why was I never told? They should have told me about it, shouldn't they? Then I read the rest of the information… still I did not know the meaning of the terms.” (Mis, 23)

Mis also received contradictory information with regard to her infant's condition, which rapidly deteriorated.

“On Wednesday… the doctor told me I couldn't bring my baby home because he was very sick. Since his birth, he'd been very pale… he did not have any red blood cells. The doctor said, ‘If you insist on taking your baby home and then you come back in the next three or four days, you will have to spend lots of money and his condition will be much worse.’ But the next day, a nurse came to me and said ‘You can take your baby home, ma'am, he is well now.’ The doctor was off duty that day. With the nurse's approval, I took my baby home. Three days later, he started to have fever and seizures.”

As his condition deteriorated, Mis took him to a specialist paediatrician. She was uncertain of the paediatrician's advice “not to worry” and she decided to take him back to the hospital. However, after one day, she decided to take him home again because of the rough treatment being given to him. He died at home four weeks later.

Both women felt that they had received insufficient information and their infants had received poor health care in hospital. They felt angry and disappointed in the health system. Although they did not articulate this as violations of their rights in formal terms, they clearly understood that they had been failed by the health care system and that their babies had deserved a higher quality of care than they had received.

Isolation, sadness and guilt: the need for support

Poor or unclear knowledge about the cause of stillbirth and infant death, or about the medical condition of pregnancy associated with the loss, placed tremendous emotional pressure on the women. Some experienced an unbearable sense of guilt; others reported being blamed by family members, neighbours and health care providers for the loss. Two women were blamed by family members for “carelessness” and not complying with cultural practices, including ignoring proscriptions such as not “working too hard” or “eating hot foods” during pregnancy.¹² One woman's brother suggested that she had caused the stillbirth by taking showers and going out at nighttime, though she interpreted this as concern about her health and safety. Three other women felt that their neighbours blamed them for the loss, and this led them to avoid social gatherings and their neighbours. Arin, who had a stillborn baby, isolated herself for two months after her loss. She was afraid to go outside for fear of being questioned or reproached by her neighbours.

“Sometimes, I was scared to go outside. I did not want people to ask me about anything relating to my baby. There were people who said, ‘It was your fault, because you ate this and that.’ I did not like people to ask and say maybe this or that, so I decided to leave my home for a while and went out of the city to get some rest.” (Arin, 26)

Iin also felt that her friends and neighbours blamed her and she felt guilty.

“All of those people blamed me… My neighbours asked me, why was my baby sick? Why did I not take him to the doctor right away? Yes, I did plan to take my baby to the doctor… I felt that everyone was accusing me over what had happened… My feeling of guilt is certainly greater than my feeling of sadness. I kept asking myself how come I was so negligent. Maybe God sent me a message saying that I could not take good care of my son and therefore He took him back. I know it was God's will.” (Iin, 29)

Lilis was also accused by a neighbour of responsibility for her infant's death; the neighbour commented that “it was a pity that the baby died because she would have been pretty; it was just that her mother was insane”.

Gossip and social censorship are common and are often experienced as a form of social violence by those who are its targets.¹³ Four women isolated themselves for 6–8 weeks, staying at home most of the time or with relatives in another city, and felt too anxious to go out and meet friends or neighbours. Their daily activities in this period changed dramatically. One woman avoided going to the market to buy fresh food and instead bought cooked food from vendors passing her home in the afternoon. Another reported:

“For three months, I did not go to Sunday Mass at the church. Once, around mid-July, my husband asked me to go to church. So I went with him and my family. But… when I saw the children… I could not help but cry… it wasn't that I was afraid that my neighbours would ask about the baby; I was just scared to remember all of those sad things. I remembered how long I had to carry my pregnancy… it was so long… this memory made me feel sadness and self-pity.” (Ilah, 25)

The importance of social support from three sources was identified by all ten women: families and relatives, health care providers, and members of their social networks such as friends and neighbours. The kinds of support they did receive included financial and material support and moral and emotional support, including comfort, sympathy and genuine care. Support from family, particularly from their husbands, mothers and sisters, was very important for regaining confidence and dealing with grief. Husbands shared the pain and grief, and were a primary source of comfort, help and encouragement. Other family members, including parents-in-law, uncles and aunts, were also sources of primary support. However, one woman said she could not really discuss her sadness and grief with her family, because she did not want to put any emotional burden on them. Another said that while she often cried when alone, she always tried to be strong in front of her husband.

All four women who had stillborn infants presented to the relevant health service, and the stillbirths were recorded. Only two of the other six reported the death. Of these six, only two from the rural area and one from the urban area reported receiving any support from health workers in the form of expressions of sympathy, reassurance or information. The two rural women reported receiving emotional support both from village nurses and traditional birth attendants, and one woman from the urban area received emotional support from her nurses when her baby was very sick and cared for in the hospital.

“The bidan (nurse-midwife) was helpful. In fact, she was very quick to come to our house, when the traditional birth attendant called her… The bidan did not stay until my baby was born, but she said that she would include me in her prayer. I cried when she left, but the traditional birth attendant stayed and accompanied me until my baby was taken home… A few days after I came back from the hospital, even though my baby was already dead, the bidan visited me. She asked my condition, and gave me some explanations regarding my recovery and she visited a couple of times after that.” (Risa, 22)

The three other women who had stillborn infants from the urban area reported receiving neither support nor comfort from health providers; they were sent home soon after finding out that their babies had died and were told simply to come back the following day for delivery of the dead infant. One woman, Tika, was horrified when she was told that her baby had died and that she had to go home.

“It was Friday… and I was asked to go home and come back (to the hospital) the next day. They said that the doctors had left already. That seemed careless and uncaring… how could they neglect me like that? Then my mother and I went home, and we called around other hospitals until finally we were able to find a place in another hospital.” (Tika, 27)

Women also felt that having someone outside the family to whom they could speak was cathartic: it was a way of managing pain, distress and sadness. Only two women, however, reported receiving support from close friends or neighbours. In Ilah's village, relatives and neighbours conventionally visit a bereaved family and pray (tahlilan) with them each night for seven consecutive nights. After the prayer, when the women and children go home, the men stay and socialise, or play cards to keep the family company until early morning:

“People who visited me… many of them came–the visitors didn't stop… At night the young people would stay awake until the next morning … until ten days had passed. People were constantly praying (tahlilan) until the seventh day of the death of my baby.” (Ilah, 25)

This form of community support appeared to ease women's suffering and to facilitate the process of grieving. It was also reassuring because of the emphasis placed on the spirit of the child entering heaven, which was important in easing women's sense of guilt for having lost a child.

Those who did not receive any sort of formal support or counselling from health providers said that spirituality and religious practices were their only avenue to reconcile themselves to their loss. Many of the women read the Qur'an, recited special prayers, visited their baby's grave and made donations to charity to ensure that their babies would rest in peace. The elders had told Ilah (age 25) that if she saw any living creature in her room, she should not kill it. When a butterfly came into her house and remained in one spot in her bedroom for 40 days, she consoled herself that it represented the soul of her son, sending her a message of farewell.

Javanese rituals call for a 40-day mourning period, followed by 100- and 1000-day ceremonies, including for stillborn babies, and are the means by which people manage grief and strive towards ikhlas, a state of “willed affectlessness”, when members of the bereaved family are expected to quiet their true emotions and become detached.^{11 14} Most of the women in this study accepted their loss as divine decree, and used this notion to rationalise and reconcile themselves to their infant's death. Most women were still mourning at the time of the interview. Some said that they had started to feel better when they stopped dreaming about their babies, or had stopped waking up involuntarily at night or early morning, as if their babies were still alive. Women who had been able to take care of their babies before they died were more likely to report waking at night or early morning. Risa, whose baby was stillborn, explained her struggle to cope with the loss; she kept telling herself: “It's all right. I am not the only one who has experienced this.” (Risa, 22)

Discussion

Women's accounts of loss and grief provide invaluable insights into their struggles and distress. The failure of the health system to protect their rights to care, for themselves and their babies, information, consent to treatment, and to counselling and support–as part of a comprehensive approach to maternal health–results in women experiencing unnecessary guilt, self-isolation and self-punishment. When women do not have a clear understanding of the danger signs in pregnancy, they have no way of knowing the urgency for medical attention. Thus, early prevention may become impossible. Even those who are diagnosed as having high-risk pregnancies may be unaware of their condition and the additional measures available to assist them in achieving positive maternal outcomes. Moreover, when women do not adequately understand the health condition of their babies, they cannot make appropriate decisions regarding care.¹⁵ When they are not offered support or comfort, they may have greater difficulty reconciling to their loss, dealing with their grief and regaining confidence.

This paper draws on a small sample of women who experienced stillbirth, neonatal or infant deaths, but it is the first study in Indonesia of how the health system deals with these events, given women's state of mind. The results suggest the need to examine how women are treated in other country settings where neonatal mortality rates are high. The study also raises questions about our understanding of social support for women who have experienced the loss of a baby. Proximity, social connection and connectedness (e.g. friends or neighbours) do not necessarily guarantee access to social support.^{16 17} Friends, neighbours and other social networks, as this study illustrates, can be a source of distress instead.

Although adverse pregnancy outcomes resulting in stillbirth and neonatal death are relatively rare, complications of pregnancy affect a substantial minority of women, and women are especially vulnerable at such times. Women's post-partum experiences of medical and nursing care, as described in this paper, suggest that in Indonesia, the maternal and child health programme needs to develop country-specific means of detecting violations of reproductive rights^* and ensuring that those rights are protected and fulfilled in practice.¹¹ This can be achieved through training and education for health professionals and policymakers, and by educating women about their rights as patients.

Second, it is essential that countries with high infant and maternal mortality provide post-partum care that includes support for those who experience stillbirth and neonatal death, including counselling and home visits. Such services should give women the correct information on the cause of death of their babies, as this may help to reduce their personal burden and prevent self-blame. It is important to ensure that health workers at district and village levels are trained in counselling for women and their families who experience loss, as commonly practised in developed countries.¹⁸ Counselling and advice following neonatal death may also help women plan better for future pregnancies and avoid misplaced anxiety. Such services would bring the additional benefit of increasing health literacy among women, their families and communities.

Notes

* We posit the following reproductive rights on the basis of human rights instruments and international consensus agreements of particular relevance to our analysis: a woman's right to receive appropriate information about her own health and that of her baby and to make decisions in relation to care, and the right to sexual and reproductive health care services, including information, counselling and support.¹⁰

* Another violation of rights in the larger sample included domestic violence.