India's infant mortality rate has been in decline over the last two decades with the national rate now at 40 deaths per 1,000 live births as opposed to 80 per 1,000 live births in 1991. But official data on India's infant mortality complied by the country's statistical organisations and analysed by global health organisations and public health experts over the years may still be missing the real picture of India's dying babies.

One reason for this is the lack of data on stillbirths.

On August 16, the World Health Organisation released a publication urging countries like India to improve the data on stillbirths, which in turn can help improve the data on maternal and neonatal deaths. A stillborn baby is one "born with no signs of life at or after 28 weeks’ gestation”, according to the World Health Organisation.

Every year worldwide 303,000 women die during pregnancy and childbirth and 2.7 million babies die during the first 28 days of life. A study published in the journal Lancet found that an average of 2.6 million stillbirths occurred every year between 1995 and 2009, 23.2% of which were from India.

In India and many other developing nations stillbirths are not counted as neonatal deaths. Neonatal deaths are those that occur within 28 days of a baby being born. Nearly all babies who are stillborn and half of all newborn deaths are not recorded in a birth or death certificate, and thus have never been registered, reported or investigated by the health system.

“From 28 weeks in the womb, the baby is viable [can survive outside the womb]," explained Dr Ajay Khera, deputy commissioner with the Ministry of Health and Family Welfare. "Often, the new born is delivered and even cries. But the doctor is not able to save the baby. It was then be recorded as a neonatal mortality. In fact a large number of newborn deaths are recorded as stillborn, and not as a neonatal death.”

Missing stillbirths skew the record of neonatal mortality that has been one of the Millennium Development Goals and continues to be an important indicator of health and development.

New classification

To correct the data dissonance, the WHO is pushing countries to now make a record perinatal deaths, which refers to the number of stillbirths and deaths in the first week of life.

India has, so far, has been using the traditional way of recording mortality by registering both infant and neonatal deaths as against live births. The WHO's proposed new classification of perinatal mortality will capture the time of perinatal death in relation to the the onset and duration of labour, and the neonatal period up to seven days of postnatal life.

This change in classification will result in an increase in number of recorded neonatal deaths in the country.

Credit: World Health Organisation
Credit: World Health Organisation

“Our estimation is that stillbirths will be almost as many as neonatal mortality rate – 22 for every thousand live births,” said Khera. Currently the infant mortality rate (mortality below one years of age) is 40 for every 1,000 births, as per the Sample Registration System data of 2013. The national average for 2014 is still awaited.

Even among stillbirths, there is a need to differentiate between fresh stillborn foetuses that die just before birth and macerated stillbirth, in which the foetus has been dead for a longer time before it is delivered.

“We estimate that there are an equal number of fresh and macerated still births," said Khera. "Macerated still births are associated with maternal mortality [as it results in more complications]. This data will be a window to even maternal mortality.”

The new classification system will also requires countries complete a basic death review, which is an in-depth investigation into causes and circumstances surrounding the death.

Better data, better survival

Activists have been asking for this system of classification for a while now because not having to count perinatal deaths, leaves a huge gap in data that can be acted upon to better maternal and child health.

“Infant mortality rate only indicates children who are born alive, but not stillbirths,” said Dr Yogesh Jain, co-founder of Jan Swasthya Sahyog, in Bilaspur, Chhattisgarh. “Including perinatal mortality in neonatal deaths will knock off the loophole healthcare workers have been misusing so far, provided they follow it.”

Most stillbirths and neonatal deaths are preventable with quality health care during pregnancy and childbirth.

“We need to ensure all births and deaths are counted, and that we can understand what to do to prevent future deaths, no matter where they occur,” Ian Askew, director of reproductive health and research with the WHO as quoted in the press release. “By reviewing the causes of maternal and infant deaths countries can improve quality of health care, take corrective actions, and prevent millions of families from enduring the pain of losing their infants or mothers.”

Khera agreed. “We have managed to reduce the infant mortality rate from about 80 every thousand births to 33 deaths every live births.,” he said. "This classification will make the programme better."