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UK Making 'Slow Progress' On Stillbirth Prevention, And Lack Of Awareness Means Parents Suffer In Silence, Report Reveals

18/01/2016 23:35 GMT | Updated 19/01/2016 12:59 GMT

There has been slow progress on preventing and reducing the number of stillbirths in the UK compared to most other high-income countries, a new landmark report has revealed.

The UK ranks 21st out of 186 countries in the world for stillbirth rates, with 2.9 stillbirths per 1,000 births, according to the Ending Preventable Stillbirth research published in The Lancet.

Researchers noted there is still little awareness of stillbirth in British society, meaning many parents end up suffering in silence.

Series co-lead, Professor Joy Lawn from the London School of Hygiene & Tropical Medicine, said: "The message is loud and clear - shockingly slow progress on stillbirths is unacceptable."

woman ultrasound

Lawn continued: "We must give a voice to the mothers of 7,200 babies stillborn around the world every day.

"Half of the 2.6 million global annual deaths could be prevented with improved care for women and babies during labour and childbirth, and additionally, many more lives could be saved with effective care during pregnancy."

The Ending Preventable Stillbirth Series was developed by 216 medical experts and researchers, who hope it will kickstart changes that will reduce the risk of stillbirth and lead to parents becoming more informed.

The global study developed by the London School of Hygiene & Tropical Medicine with the World Health Organization and UNICEF, saw researchers investigating the stillbirth rates for 195 countries.

Researchers found ten countries account for two-thirds of stillbirths globally, with India having the highest number estimated at 592,100 in 2015.

The two countries with the next highest rates were Pakistan (43.1 per 1,000 total births) and in Nigeria (42.9). The lowest rates were found in Iceland (1.3), Denmark (1.7), Finland (1.7) and the Netherlands (1.8).

The researchers also looked into whether the stillbirth rate had decreased year-on-year in each country, to determine what progress was being made.

The report revealed the UK's rate of stillbirth reduction was 1.4%, compared with the highest in Netherlands at 6.8%.

The United States is one of the slowest progressing countries with a reduction of 0.4% per year.

Why is there a lack of information and awareness about stillbirth?

"Pregnant women are reluctant to talk about stillbirth and there is certainly a culture of not wanting to scare mums during pregnancy," Elizabeth Hutton, CEO, Count the Kicks told HuffPost UK Parents when commenting on the findings.

"The key is to talk to women in a positive way about what they can do to help themselves and empower them with knowledge and confidence about the things they can do to minimise risk.

"Not smoking, practising a healthy lifestyle and checking baby movements regularly during pregnancy can all help to minimise risk of stillbirth."

woman grief

The research revealed the number of stillbirths in the UK is around 10 times higher than the number of cot deaths, but stillbirths are not reviewed in the same way, meaning parents may be left without answers as to why their baby died.

Jane Brewin, CEO of pregnancy charity Tommy's said the lack of answers is partly down to it still being quite rare.

She told HuffPost UK Parents: "In the NHS, there is a fear that there is something they have done, which has contributed to the event happening, so there is a reluctance to say too much for fear of implicating things themselves.

"But also, it's one of those big taboo subjects, partly driven by the magnitude of the colossal event this really is in people's lives.

"It's just the most devastating event to happen."

Brewin's advice on steps parents should take to gain as much information as possible

1. Parents should start right at the moment of the baby passing away - they need to retain their hospital and medical notes. It'll be something they will want to look back on and it can get clouded in the midst of time. Retaining notes means you have that evidence.

2. Parents should request an autopsy on the baby and a pathology report on the placenta- it's a very difficult thing to do but it may be helpful in finding out the answers and getting that information you need.

3. After, parents should be given a review with a consultant and I really advise people to take their notes to that review, prepare well, and ask a million questions.

Sarah Dobson, 32, from Guildford, Surrey, who had a stillborn son Hamish in April 2014, said it is import for women to be well-informed.

"There’s such a massive taboo about stillbirth and so many preventable deaths like Hamish," she said.

"I didn’t sleep a wink that first night, just cried and cried. I thought I’d never stop. We had a post-mortem and the results were heartbreaking.

"There was nothing wrong with our son, but my placenta had been failing for some time, despite so many hospital visits, appointments and checks, his growth had clearly slowed down yet the warning signs hadn’t been picked up."

Dobson said she felt such guilt after losing Hamish, which was fueled by feeling like she didn't have the right information, especially with regard to monitoring movement and reporting any change.

She added: "I understand doctors and midwives don’t want to frighten people but women need to be well-informed, it could save their baby’s life."

How can we stop parents suffering in silence?

The research found that parents' can suffer from mental health problems following a stillbirth, with more than 4.2 million women living with symptoms of depression, often for years.

Brewin said: "Mix the lack of information and awareness with parents feeling guilty because they feel like they've done something wrong or caused it, and it just shows why they seem to be suffering in silence."

Hannah Ward from Sands - the stillbirth and neonatal death charity - agreed that the nature of the subject means many families feel alone.

"Stillbirth remains very much a taboo subject," she said.

"Many families whose baby is stillborn report feeling isolated. Sadly the reality is that it’s a tragedy that can happen to anyone.

"However, while bereavement care remains patchy across the country, the report in The Lancet today shows there have been significant improvements in the way parents and families are treated following a stillbirth, with most getting the opportunity to see and hold their baby and create memories."

Brewin urged women to understand they are not alone, explaining midwifes and medical experts at Tommy's are on hand on their helpline to answer any questions, discuss future pregnancies and relieve the burden of guilt.

She added: "There are many people who have been in this position and have found a way to continue their lives.

"We are here every single day for parents if they want or need anything, even if just for a chat."

Ward also stated that there is help available for grieving parents, who do not need to suffer alone.

She said: "Here at Sands we offer support to anyone affected by the death of a baby, in a number of ways.

"We have a telephone and email helpline, and a forum where parents can support other parents in a safe online space. We publish a series of support and advice booklets that are free to order or download. We also have an incredible network of around 100 Sands groups across the country.

"These are run by volunteer bereaved parents and offer peer-to-peer support and befriending by trained befrienders."

What steps need to be taken to increase awareness?

The new research also included the first global analysis of risk factors associated with stillbirth, underlining that many deaths can be prevented.

These risk factors included treating infections during pregnancy, tackling obesity, strengthening access to and quality of family planning services and addressing inequalities for women in disadvantaged communities.

The research is calling for more focus on the baby before birth, with increased funding for pregnancy care.

Researchers argue that high-quality care during pregnancy and labour would result in a "quadruple return on investment" by saving lives of mothers and newborns, preventing stillbirths, and also improving child development.

Series co-lead, Vicki Flenady, associate professor from the Mater Research Institute - University of Queensland, urged: "All countries should implement and respond to high quality national audits of these deaths, which will lead to improvements in quality of care.

"This has been the case in the Netherlands, which has had the steepest reduction in stillbirth rates.

"If every high-income country achieved stillbirth rates of two or less, like the best performing countries, then nearly 20,000 stillbirths could have been prevented in 2015."

Ward added: "The death of a baby is not inevitable.

"We are pressing for a standardised review tool to be rolled out across the country, to better understand why things go wrong and identify if there were gaps in care that could be addressed."

For more information and advice:

Sands charity: UK charity providing support for bereaved parents and their families.

Count The Kicks: Charity trying to prevent the tragedy of stillbirth happening to any family.

Tommy's: a charity that funds medical research into miscarriage, stillbirth and premature birth and provides information on having a healthy pregnancy.

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