Stillbirth: a hidden global epidemic of grief

One stillbirth occurs every 16 seconds.

It’s more than four years since Richard Horton, the editor-in-chief of The Lancet, said “not all global health issues are truly global, but the neglected epidemic of stillbirths is one such urgent concern.”

The stillbirth landscape remains the same today, even at the height of other global health issues that are, clearly, truly global. It’s been nearly two years since I’ve published a blog. I’ve started to write a few, but I haven’t been able to get through them (more on that in a new post coming soon, I promise).

A few weeks ago I received a DM on Twitter from an obstetrician in Australia about an initiative being put together by UNICEF (the United Nations children’s charity) and the International Stillbirth Alliance to harness voices of parents who’d experienced the death of their children through stillbirth around the globe. Clearly this is not an offer one turns down, and it’s got me writing again too.

The UN report on global stillbirth numbers, published 8 Oct 2020.

This group of voices was being assembled to coincide with the latest UN Inter-agency Group for Child Mortality Estimation report that’s published today. You can read the full report here, but on the day it comes out, I wanted to explore some of the key points. The first half of this blog may have a lot of stats and numbers, but I hope you’ll persevere even if statistics aren’t your thing.

I opened this blog with the opening line of the report.

One stillbirth occurs every 16 seconds.

Just process that in your own mind for a minute. If you do that, of course, four more babies will have been stillborn while you do. One baby every sixteen seconds. That’s well over 5000 babies every single day.

Two MILLION babies are stillborn every year. It goes without saying that this doesn’t include the myriad other different types of pregnancy loss – miscarriage, ectopic pregnancy, molar pregnancy, Termination for Medical Reasons, and more. It also doesn’t include the unknown (but inevitably vast) number of stillbirths around the world that aren’t recorded.

Even in the UK, not all the babies that are stillborn feature in this number. Different countries record stillbirths from different gestations, some as low as 20 weeks, some not until 28 weeks. Here in the UK, stillbirths are recorded from 24 weeks’ gestation. However, with all these differences, to make a global assessment, you need to calculate from a common denominator – so these figures relate to stillbirths from 28 weeks’ gestation onwards.

The report acknowledges this weakness, stating

using a 28 week or more definition underestimates the real burden of stillbirths, since it excludes stillbirths occurring at earlier gestational ages.

Whilst globally, progress is being made, that progress still seems slow – the report shows that the annual rate of reduction of stillbirth this century (2.3%) isn’t keeping pace with the reduction in neonatal mortality (2.9%), maternal mortality (2.9%), or child mortality between 1 month and 5 years (4.3%). Having seen 48 million stillbirths in the last two decades, this report shows that, based on current trends, a further 20 million stillbirths will take place before 2030.

Inevitably, the vast majority of stillbirths come from countries in the developing world. There is a reduction globally, but in sub-Saharan Africa the total number has actually gone UP (from 0.77 million in 2000 to 0.82 in 2019) – the rate is declining but being outpaced by the growth in total births.

The report doesn’t just focus on the developing world. It draws attention to lack of improvement in high-income countries too, noting

in some high-income countries – despite very low levels of neonatal mortality – more stillbirths than neonatal deaths occur.

They’re talking about you, UK.

But here’s the real kicker – and it’s heightened by the fact that these sorts of organisations have been making the same point for many years – many of these babies Do Not Need To Die. For decades, stillbirth has been seen as ‘one of those things’, an unavoidable inevitability in a certain tragic number of cases – but the truth is, it’s not. I’ve talked on here in the past about the Saving Babies’ Lives Care Bundle and the need to identify at-risk babies so that something can be done to prevent their needless deaths. Yet here it is, a global overview report saying the same thing:

What makes these deaths even more tragic is that the majority could have been prevented with high-quality monitoring and care antenally and at birth.

Over 40 per cent of all stillbirths occur during labour – a loss that could be avoided with improved monitoring and timely access to emergency obstetric care when required.

This adds an extra layer to the opening sentence of this blog – four babies are dying from stillbirth every minute and the majority are avoidable.

Inevitably, the lack of available data is one of the biggest obstacles to progress. This report calls for improvements in data collection and analysis, but more than that – it calls for more attention, more focus, on this oft-overlooked topic.

If we don’t know where, when, or how often something is happening, how can we possibly hope to address it?

The disparity between high-income and low-income countries is stark. The lowest national rate is 1.4 stillbirths per 1000 births (Monaco, followed by Japan at 1.5, South Korea at 1.7, Iceland at 1.9, and Finland & Denmark at 2.0). The highest national rate is 32.2 stillbirths per 1000 births (Guinea-Bissau, followed by Pakistan at 30.6).

Around half of the world’s stillbirths occur in just SIX countries – India, Pakistan, Nigeria, Congo, China and Ethiopia – with a third of the global number found in the first three of these countries.

27 countries have a rate above 20/1000 – 22 in sub-Saharan Africa, and the remaining five all in Southern or Western Asia or North Africa.

21 countries (NOT including the UK or the US) have a rate below 2.5/1000.

The UK’s official rate is 3.8 per 1000 live births. This is based on UK definitions that record stillbirths from 24 weeks. Adjusted for this report (28 weeks and above), the UK rate is still 3.0 – twice that of Japan.

The report identifies a number of factors in high income countries including maternal education and socioeconomic status. It also, importantly, makes this observation

Ethnic minorities in high-income countries may also lack access to sufficient antenatal care, leading to higher rates of antepartum stillbirth.

Powerfully for me personally, knowing what I know now about the factors that led to Henry’s death, the report notes “fetal growth restriction as a common underlying pathway”.

Improving support, care, and education are obviously essential factors in reducing risk, regardless of where in the world a woman finds herself:

From what we do know about the causes of stillbirth, it is clear that providing quality care, support, and resources that encourage healthy lifestyles and pregnancies can greatly reduce a woman’s risk of stillbirth.

The report makes some detailed observations about variations in rate of reduction over the last two decades – Turkey and China lead the way (-63%), heading 14 countries that have reduced their stillbirth rate by half. At the other end of the spectrum, 28 countries reduced their rate by less than 15% IN TWENTY YEARS. Five countries did not record a decline at all between 2000 and 2019.

The Every Newborn Action Plan sets a target of 12/1000 by 2030. This is good in one very clear sense – as it requires much focus from the countries with the highest stillbirth rates to be able to attain this target. However, it’s really important that high-income countries who are already well past this target don’t see this as a reason NOT to focus attention on this issue.

Some interesting analysis of the impact of COVID-19 on stillbirths is contained within the report – and these are hugely significant for healthcare providers and professionals in ALL countries to remain conscious about.

For many pregnant women around the world, the pandemic has meant weakened health care systems and inability to access quality care, including new obstacles to care such as reduced transport options and fear of contracting the virus.

Alongside the additional lives expected to be lost, there is already evidence that COVID-19 related issues are impacting women and their partners after delivering a stillborn, including forced isolation of mothers delivering babies in facilities and reduced or even absent bereavement care following a stillborn death. The pandemic is depriving many parents of a sense of control over their care and experience around birth; this is even more pronounced for those whose child is stillborn.

The resulting mental health consequences of this time may be severe and long-lasting.

Chillingly, the report estimates that “60,000 to 200,000 additional stillbirths may occur over a 12 month period as a result of COVID-19 health service disruptions. You won’t see these numbers included in global Covid-related death estimates.

Signficantly for us in the UK, the report identifies that the impact of COVID-19 on stillbirth will be more pronounced in high-income countries with low stillbirth rates.

The greatest potential indirect impacts of COVID-19 on stillbirths were estimated to occur in countries where pre-pandemic levels of antenatal and childbirth care were relatively high. Countries with low coverage of stillbirth interventions prior to the pandemic were estimated to have small increases in stillbirths.

This seems logical to me – if you did relatively little before COVID-19 to reduce stillbirth, it isn’t going to change much. So this is my plea to healthcare professionals in the UK – please, think laterally, think creatively, come up with ways to minimise the impact of Covid on these families, whether that’s in terms of saving their babies, or of caring for them afterwards.

Already we hear anecdotal reports of bereavement suites being repurposed for Covid-related matters as they aren’t seen as being as essential as clinical areas. THEY ARE.

One thing that the report really emphasises, which is so important to me as a trustee of Beyond Bea Charity, is the essential need for training and education for health care workers and midwives – both on prevention of stilbirths and on supporting families who have suffered a pregnancy loss.

And hearteningly for me, the report looks at the wider landscape of stillbirth and pregnancy loss, not just getting buried in statistics. It talks about the elements that so many of us have been talking about for years, with varying degrees of success.

It talks about the hidden nature of this grief:

The invisibility of stillbirths is not only apparent in data and statistics. It is also an issue at community and social levels.

Stillbirths are often regarded as inevitable events…in some cultures stillbirths are perceived as the mother’s fault…the lack of opportunity to publicly grieve can cause stillbirths to be considered “non-events”. These social taboos, stigmas and misconceptions often silence families, or impact the recognition and grieving of stillbirths, contributing to their invisibility.

It calls on health care providers to include parents in their child’s death review. This is an essential measure and should be ingrained in the system here in the UK immediately.

It recognises the wider implications of stillbirth on mental health:

The grief that results after a stillbirth has been described as complex and unique, in part because of a lack of acceptance or legitimisation of the grieving process by society. Women and their partners who experience stillbirth have higher rates of depression, anxiety, and other psychological symptoms that may be long lasting…

…negative psychological effects may continue into subsequent pregnancies, even following the birth of a healthy child…

Studies show that professional services, support from family, and local social networks that enable parents to share experiences may lower rates of depression and improve mental health.

And VITALLY, this report recognises the impact of stillbirth (and other pregnancy loss) on the health care professionals involved in supporting these families.

It’s very easy for society to overlook parents’ grief in these moments, but it’s even easier for it to overlook the grief felt by health professionals. This is a hugely traumatic experience for parents and professionals alike – and the sooner that we recognise that the death of a baby is traumatic and upsetting for EVERYONE, the sooner we can get on with the job of normalising talking about this issue.

For health care professionals to be able to provide good quality care, we first have to give them the tools and the toolkit to do so, and to be able to support themselves at the same time.

Studies show that many midwives are not adequately prepared for stillbirths and unable to appropriately support women when stillbirth occurs. These issues can be addressed by education, training, and provision of formal and informal support during and after a stillbirth.

It is CRITICAL to develop a bereavement care package that can be adapted to different cultural settings, offer bereavement training as a standard part of obstetric and midwifery training, and prepare health care workers to deliver respectful bereavement care.

So this report had lots of stats at the start (as has this blog, sorry!), but lots of sensible recommendations at the end. We can easily get lost in stats – but we must always remember that behind every single statistic is a baby that’s died, and a family that’s been dealt a lifetime of grief.

Recommendations from today’s UN report

So – as we go into Baby Loss Awareness Week 2020, we must heed the evidence of these statistics, steel ourselves and push forward again.

But we must also remember the measures that follow the data – more recognition of the impact on professionals, and better training (and better care) for them, so that they are able to do the best job they so desperately want to do for families. This MUST be an absolute priority for health care providers all across the world.

And we must also remember that the grief of families is amplified by societies that make them share this grief in whispers, meeting each other in dark corners, forced to the periphery by a society which doesn’t even want to think about the death of babies, because it finds it too upsetting. It’s brutally upsetting – but we’re going to grieve our children whether you let us do so publicly or not.

Isolating bereaved parents (whether bereaved through stillbirth or any other kind of pregnancy loss) makes things worse for them.

So let’s talk about this issue openly, honestly, and publicly.

It’s too big an issue not to do so.

One stillbirth occurs every 16 seconds.

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