THE BLOG

Why Should Anyone Need Convincing That Giving Birth to a Dead or Dying Child is Devastating and Traumatic?

25/01/2016 14:29 GMT | Updated 25/01/2017 10:12 GMT

As a bereaved parent it's bewildering to me that anyone needs convincing that giving birth to a dead or dying (in my case) child is devastating and traumatic, and therefore worth targeting as a health care priority. Or that the case has to be made that many of these tragedies are potentially avoidable, even when national audits have been telling us this for two decades.

If people are still not convinced by the work of charities like Sands (which has been supporting tens of thousands of bereaved parents across the UK for 40 years) or the fictional lives of Eastenders' characters (Shabnam Masood had a stillborn baby in August last year) then perhaps a well-respected medical journal will help. The Ending Preventable Stillbirths Series, a set of new research papers published in the Lancet today, highlights the 'underappreciated psychological, social and economic impacts of stillbirth on parents, families, caregivers and countries', and reports that 'fatalism and stigma' are partly to blame which 'persist both across communities and in the health care workforce'.

The International Stillbirth Alliance (ISA) ran three online surveys of 6,600 people in 32 high income countries to support the publication of today's Lancet Stillbirth Series. These revealed that two out of three respondents said their community 'believed that most stillbirths are not preventable and that parents should not talk about their stillborn baby because it makes people feel uncomfortable'.

If the annual 2.6million bereaved mothers like me, around the world, still can't persuade our communities and carers of the emotional cost of stillbirth - the sense of guilt, failure and isolation, the different but profound life choices we have made a result - then there is the compelling economic argument for taking action. When a baby is stillborn, The Lancet reports, the financial cost is anything from 10% up to 70% higher than the cost of a live birth, with 'additional costs to government due to reduced productivity of grieving parents and increased welfare costs'. Researchers haven't even taken into account the clinical negligence costs to the NHS in maternity, associated with avoidable perinatal harm, which amounts to £100s of millions every year.

In truth, of course, we are lucky here in the UK. The global burden of stillbirths falls on low-income countries where a woman's lifetime risk of dying herself as a result of pregnancy or childbirth is one in 180. It is shocking to hear from The Lancet that at current rates of progress, it will be more than 160 years before a pregnant woman in Africa has the same chance of her baby being born alive as here in the UK.

But we squander what expertise/privilege we have in Britain. The Lancet tells us that audit and review are the keys to saving lives - understanding trends and reviewing deaths when they happen to see how care can be improved and lessons learned. Here in the UK we have a world-renowned national audit programme.

The trouble is, not only do we struggle to hear the voices of our own parents but we also don't heed the advice of our own experts. A national stillbirth audit in the late 90s reported that 45% of stillbirths were avoidable if only women received routine antenatal care, according to NICE guidelines. Nearly 20 years later the UK's new national audit of term stillbirths - babies who died close to their due dates in 2013 - found that 60% of deaths might have been prevented had women been properly monitored - nothing novel, just applying what we know. The report was virtually an echo of the earlier one. No wonder the UK finds itself in the bottom third of The Lancet's league table of 164 countries for its performance in reducing stillbirths. Progress is grindingly slow, three times slower than our success in preventing the deaths of newborns.

Our very good but woefully underfunded national audit programme MBRRACE-UK also tells us that only 10% of term stillbirths received accepted standards of review to understand exactly what happened and why the baby died; parents are being told 'nothing could be done' and in many cases that's not true.

As The Lancet so well describes, the paralysis in progress issues from a culture of 'fatalism, taboo and stigma' and the prevailing belief that a mother can always replace a dead baby with a living one 12 (leaving a three month grieving gap) or so months later. Ask the roughly 3,000 odd parents whose baby dies around its delivery date every year in the UK, and they will tell you that's just not the case.

A few weeks ago, Jeremy Hunt announced a 50% reduction in stillbirths by 2030 and a 20% reduction by 2020. But the lives of hundreds of babies could be saved tomorrow just by doing what the experts recommend. Four years ago, Scotland set a target to reduce stillbirths by 15% by 2015, and they achieved it with leadership, improved practice and greater awareness.

The Secretary of State's own targets are welcome but to achieve them, we need to value and cherish the role maternity plays in public health and resource it properly so midwives have the time to adequately support women, monitor pregnancies appropriately and escalate care when needed. More than 30% of mothers in the ISA on-line survey said they raised concerns about their pregnancies but these were dismissed; they didn't feel 'listened to'. Sands ran a survey of bereaved parents in 2009 in which parents told us the exact same thing; women also reported this to a Department of Health policy research unit in a national survey two years ago.

Of course there are gaps in research, not least in monitoring so-called low risk pregnancies close to term, but we also have a good deal of information right now - and we have heard it time and again. It's about improving care to meet standards we've already established, not in 5 years' time but now.

Charlotte Bevan, Senior Research and Policy Advisor, Sands (stillbirth and neonatal death charity)