Why India’s Stillbirths Are Still Not Counted Properly

These women, Khan said, often have not recovered from their trauma. “Stillbirths are not acknowledged at all in our society.” Khan is also the founder secretary of Stillbirth Society of India.

Stillbirths are often considered a curse, or fate--but they are a key indicator of the quality of care during pregnancy and childbirth. Epidemiologists and doctors such as Khan who work on this subject say that large-scale apathy about stillbirths seeps from the community level all the way up to healthcare workers and enumerators.

“The focus of global health-related sustainable development goals has been on reducing maternal, newborn and child mortality,” said Neena Raina, former director, World Health Organization’s (WHO’s) Regional Office for South-East Asia, who has worked extensively on the subject of stillbirths and initiated stillbirth surveillance in member states of South-East Asia. “However, there is no Sustainable Development Goal target on stillbirths reductions.” India’s Newborn Action Plan, formulated in September 2014, targets achieving single-digit stillbirth rate by 2030.

UNICEF estimates that about 1.9 million stillbirths occurred in 2021 worldwide. Of these, India had an estimated 286,482 stillbirths (15.2%), the highest for any country--a trend that has remained the same for over two decades, according to studies. This translates to 12.2 stillbirths per 1,000 births. By way of comparison, stillbirths rates in 2021 ranged from 1.6 per 1,000 births in Japan to 31.2 in Guinea-Bissau, a country in western Africa. Globally, stillbirths are reducing, but the decline is not keeping pace with the progress in under-five mortality.

What is stillbirth?

As per the WHO, a baby who dies after 28 weeks of pregnancy, but before or during birth, is classified as a stillbirth. In Western countries, stillbirths are counted after 22 weeks of pregnancy.

“The cut-off for stillbirths is defined as per the viability of the foetus,” explained Rakhi Dandona, professor of public health at the Public Health Foundation of India. “In India and many other countries, foetuses before 28 weeks are not counted, as there is not enough medical support for them to be viable.”

Intrapartum stillbirths are those which occur after the onset of labour, while antepartum stillbirths are those which occur before the initiation of labour. Globally, in 2021, an estimated 45% of all stillbirths were intrapartum, meaning the foetus died during labour. Intrapartum stillbirths can often be prevented with access to intrapartum monitoring and timely intervention in case of complications.

Stillbirths in India are recorded in different ways. The National Health Mission's Health Management Information System (HMIS) is an administrative portal that aggregates data from more than 200,000 health facilities across the country. These are predominantly public facilities in rural areas, but also include some private and urban facilities.

As per the HMIS 2021-22 report, India recorded 11.79 stillbirths per 1,000 births.

Stillbirths are also supposed to be recorded under the Civil Registration System.

The form to be filled for recording a stillbirth under the Civil Registration System, accessed here.

The problem in recording stillbirths starts at the time of death itself. “Once there is a stillbirth, the first issue is who will be reporting?,” Raina points out. “Is it the paediatrician’s responsibility, or the OBGYN’s [obstetrician-gynaecologist]? Who do we train to report? Because it is a stillbirth and not newborn death, paediatricians do not report. There needs to be coordination and collaboration among the paediatricians and OBGYNs.”

Stillbirths also get recorded in surveys such as the Sample Registration System (SRS). In 2020, the stillbirth rate was three per 1,000 as per the SRS, much lower than the UN estimate. The National Family Health Survey (NFHS) counted stillbirths along with miscarriage and abortion in one category, which makes it difficult to compute.

In a 2023 paper, Dandona and her team compared the stillbirths in SRS and NFHS data. Using statistical methods on NFHS data, the team estimated stillbirths rate as 11.2 over a study period of 2016-2021, an estimate that is closer to that of the UN.

“We found out that neonatal mortality matches with the NFHS, but not stillbirths, indicating that there is a problem with the way stillbirths are recorded,” said Dandona. “Surveys are a reflection of what we consider stillbirths in society. Nobody wants to talk about stillbirths. We think, ‘Why record this, does it really matter?’ The interviewer comes from the same community. This mindset gets reflected in SRS and NFHS.”

With the aim to establish a robust surveillance system for identifying and recording stillbirths, in 2016, the Ministry of Health and Family Welfare established a protocol for recording stillbirths at major medical colleges and hospitals in 19 states. Several papers were published thereafter in an attempt to document stillbirth events beyond what is captured by regular HMIS, and also identify causes and associated risk factors contributing to stillbirths. The causes of stillbirth range from high blood pressure during pregnancy, diabetes, placental abruptions, to prolonged delivery.

IndiaSpend sent a detailed questionnaire to Shobhna Gupta, Deputy Commissioner and in-charge of Child Health and Rashtriya Bal Swasthya Karyakram with the Ministry of Health and Family Welfare. We will update the story when we receive a response.

Lack of care

To ascertain the cause of death in stillbirths, clinicians need to look at maternal history as well as do an autopsy and histopathology (microscopic examination of tissue) of the dead foetus and placenta. But often, crucial investigations such as diabetes, blood pressure etc. are missing from maternal history, say doctors.

The National Health Mission guidelines talk about ensuring that pregnant women are registered and have at least four antenatal care (ANC) visits (the WHO recommends eight check-ups). But as per the latest NFHS 2019-21, only 59% of all pregnant women have had at least four ANC visits during their pregnancy. This proportion ranges from 93% in Goa to 25% in Bihar.

That is why complications in pregnancy are not spotted early enough, experts say.

Even in government institutions such as primary and community health centres, where women go for antenatal check-ups, common tests are often not done.

“Often, even the blood pressure, sugar and anaemia levels are not recorded,” Khan said. “They are usually just prescribed iron and folic acid, without being even told the importance of the supplements. Sometimes women come with low quality ultrasound reports which are unable to detect any growth anomalies.”

Few or no records

If a woman has had a stillborn in the past, the chances are high that the record is destroyed. As a foetal medicine expert, Chinmayee Ratha often deals with parents who have been through more than one stillbirth.

“They often have no records whatsoever because they have burned all the reports,” said Ratha, who is based in Secunderabad. She is the chairperson of the perinatology committee with the Federation of Obstetric and Gynaecological Societies of India. “They do not want any memoires of the stillbirth. Sometimes they even change the name of the lady in the records after she has been through a stillbirth.”

Dandona led a study in Bihar where they took verbal autopsies about more than 1,000 stillbirths in 2014-15. This study showed that there was very poor reporting of maternal conditions and diagnostic tests such as hypertension, diabetes, syphilis and HIV, among others. The study recorded narratives of women who had waited too long before a doctor saw them, lack of skills on the part of the doctors or nurses, or not providing caesarean section early enough, apart from other reasons. This study also recorded cases where doctors refused to deliver the stillborn, and instead referred the mother to another hospital.

Most hospitals do not have a system for bereavement counselling. “I once saw a stillbirth baby delivered in a corner of a labour room,” Khan recalled. “It was a busy labour room, and I heard the father repeatedly asking the ward boy to give the baby to him so that he could perform the last rites. The baby was not even covered. I saw the wardboy speak in a very disrespectful manner with the father, asking him why he should do this work if his children die again and again.”

Ratha said that the “ideal” workup for a stillbirth would be to do a placental histopathology and foetal autopsy, looking for intrauterine infections. These facilities are available mostly in tertiary hospitals and medical colleges. In the private sector, the parents have to pay for these investigations and often opt out because of the heartbreak of stillbirth.

But, said Ratha, these investigations are useful for the patients themselves. She had one patient who had one preterm delivery where the baby died soon after delivery, and two stillbirths after that. Ratha convinced the family to do an autopsy of the foetus, which showed that the foetus had an abnormality in the intestine, and the umbilical cord was also showing ulcerations which was causing the foetus to die in the womb.

“In the fourth pregnancy, we delivered her preterm at around 32 weeks, before the ulcers in the umbilical cord could develop,” Ratha said. “The baby was operated for intestinal abnormalities. The baby survived and is now around 8-9 years old. The mother sends me videos of her progress.”

Preventing stillbirths

A small number of stillbirths are inevitable, but most stillbirths can largely be prevented. “With institutional deliveries increasing (NFHS 2019-21 pegs it at 89% in the country), I see no reason why we should have so many intrapartum stillbirths,” said Raina.

This requires both facilities for conducting urgent caesarean deliveries, and neonatal care for when the baby is born with complications, among other facilities. Sometimes the problem is as basic as not having enough manpower.

“In some districts, we observed that the outcomes are better between 9 a.m. and 5 p.m.,” Raina pointed out. “This is because there was just one gynaecologist posted there who was working in the morning, and in the evening the nurses who were conducting deliveries were not trained well.”

The most preventable deaths are intrapartum stillbirths, and data on that will help understand what happens in those few hours during labour.

“Point of care quality improvement is very important, especially during childbirth,” Raina says. “Skills and availability of equipment is not enough, unless those are used to improve quality of care.”

But all these measures can be taken only if there is a change in attitude among both healthcare providers and the community. Poor documentation of stillbirths reflects poor quality of care.

“How do you prevent stillbirths if you don't even document them?,” Dandona asked. “When you don't document them, you think it's your kismet. We have not invested in stillbirth because we do not know that the baby should have been born alive.”

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