Using research to ease the pain of stillbirth

As many as 4,000 babies a year in the UK are stillborn. We have one of the highest rates in the industrialised world. Yet so much is not understood about why it can happen.

But now a team at the Rainbow Clinic at St Mary’s Hospital in Manchester has published data from a five-year study which shows that certain ethnic groups are more susceptible than others.

The study, funded by Tommy’s baby charity and Manchester University, shows that black African women and south Asian women, particularly those of Pakistani origin, are two to two and a half times more likely to suffer a stillbirth than a white British-born woman.

Dr Alex Heazell, the consultant in charge of the research at Central Manchester University Hospitals NHS Foundation Trust, told Channel 4 News they did not have absolute reasons why these women might be more affected than others.

There are suggestions it could be anything from the woman not understanding that if the baby stops moving she needs to go to hospital, to the placenta, which provides the lifeblood to a baby, working differently in different ethnic groups.

Need for research

What they do know is that more research is desperately needed. A stillbirth can cause pain, anguish and despair for the parents and yet it is little talked about.

Dr Heazell, who runs the Rainbow Clinic, where they look after women who have had a stillbirth and care for them in any subsequent pregnancies, said that the grief is the same as any other child bereavement.

The couple’s families will assume that having another baby will take that grief away and that it is a replacement baby. Dr Alex Heazell

“Often the couple’s families will make the assumption that having another baby will just take that grief away and that it is a replacement baby. Parents find that very hard to deal with sometimes,” he said.

What is crucial to working out why so many babies die is research. But there is a three-year gap in the national data after the government contract was moved from one organisation to another.

Poor-quality analysis

Analysis shows that the data gathered between 2010 and 2012 is either missing or is of such poor quality that it is of no use.

The analysis published by HQIP, which audits data for England and Wales, found that for 2010 the cause of death coding was missing in 39 per cent of cases, and that some strategic health authorities had failed to record any details at all in as many as 20 per cent of cases.

We asked the Department of Health why this had been allowed to happen but they did not come back to us.

But Dr Heazell said this was data that could never be recovered. He said it made it difficult for teams like his to put their research into any context.

Mamta: showing pregnant women how to help themselves

It is a Tuesday morning, and gathered round a large table is a group of pregnant women. They were Chinese, Indian, Pakistani, English, Tamil, Ethiopian, Congolese and Latvian.

It is a project in Coventry called Mamta. It means "motherly love" in South Asian languages, and was set up 12 years ago, partly in recognition that pregnant women, who are immigrants or refugees or whose first language is not English, might just need extra help in achieving that most important of goals - a healthy outcome. A baby who is born alive and well and a mother who is equally alive and well.

They never talk about stillbirths or babies dying at Mamta. The message, delivered in a variety of languages, is about what they can do to help themselves and their baby: a healthy diet, not smoking, knowing to go to hospital if the baby stops moving.

They are also offered antenatal classes that are women-only in case they are uncomfortable with men being there. They are told about breast feeding, safe sleeping for the baby, why they need to go to their antenatal appointments. In other words, everything pregnant women are told, only in this instance with extra reinforcement to ensure that those messages are making their way through the language and cultural barriers.

The team works closely with local maternity services and GPs and Public Health Coventry.

Noreen Bukhari, Mamta manager, said there are numerous barriers that can preset these women accessing the antenatal services. "They can be cultural or social," she said. "There are language barriers, but also simply it's knowing you need to register with a GP and that it is free. There may be a fear of services or of professionals."

There are over 100 dialects spoken in Coventry alone and so it can be as simple as needing a translator. But the Mamta team says there is also a need to go out and find some of these women, to stop them slipping through the net.

Although many of them are found in GP antenatal clinics or through maternity services, Ms Bukhari said they physically go out into communities where there might be new migrant groups and "scope them".

On average they see 90 pregnant women a quarter, yet in the 12 years they have been going, she said, they have not lost one baby. A record of which they are understandably proud.

A Department of Health spokesperson said:

“Between 2011 and 2012, the department reviewed the maternal and newborn health programme because at the time, the NHS was being reformed and it was felt to be a good opportunity to make sure the programme remained fit for purpose.

“While the programme was being reviewed, data collection didn’t stop — it was collected in the interim period, but it was no longer collected by the previous provider CMACE.

“In June 2012 the MBRRACE-UK collaboration were awarded the contract for the programme and they are collecting and analysing data from all perinatal deaths from January 2013 onwards.”This new data collection is more robust and comprehensive than before.

“We are determined to reduce stillbirths and are funding research on the causes, risk factors and prevention of stillbirth and neonatal deaths and we are working other partners on a stillbirth awareness campaign.”