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Saving Babies’ Lives Report 2009 Sarah and Martin Speake with their daughter Amélie shortly before she died on March 17th 2005

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Saving Babies LivesReport 2009

Sarah and Martin Speakewith their daughter Amlieshortly before she died on

March 17th 2005

Sands is extremely grateful to the scientific and medical experts, campaigners and parents who havecontributed to this report in different ways.

These include: Gavin Ruddy, Richard Chapman, Claire Storey, Maria Viner, Brenda Ashcroft, Chris Wildsmith,Andy Cole and Bob Phillipson from Bliss, Fiona Smith from the Royal College of Nurses, Dame Joan HigginsChair of the NHS Litigation Authority, Dr. Phillip Cox and Professors Jason Gardosi, James Drife, Jim Dornanand Gordon Smith.

We would like to say a huge thank you to all the Mums and Dads who took part in our Parents survey. Yourhelp has been truly invaluable.

We would like to thank all those families for sharing their precious photographs, including: Peter and LynnBrady, Grev and Carolyn Bray, Kylie Bowditch, Clare and Wayne Roberts, Martin and Sarah Speake, Peter andPatricia Tan, Chris and Nichola Wildsmith.

We would also like to acknowledge all those who have already contributed considerable funds to theWhy17? campaign. Each donation goes directly towards the funding of research into the preventionof stillbirth and neonatal death, so a big thank you to:

Bath & Trowbridge College of Midwives, University of Bedfordshire Midwives 2007, Burley & Woodhead CEPrimary School, Foot Anstey solicitors, NDS Ltd, OES Lanarkshire District, Walsall Lions Club.

Clair Vanden, Deb Bourn, Fiona Donald, Jeanne Nicholls, Jo Cameron, Kat Anderson, Mahri-Claire Beere, Mrand Mrs Dixon, Paul Foulkes, Rob and Lucy Smedley, Sue Hale, Sean and Sian Casey.

Aberdeen Sands, Ayrshire Sands, Banff Sands, Bedford Sands, Birmingham Sands, Boston & PeterboroughSands, Cambridge Sands, Coventry Sands, Dumfries & Galloway Sands, Fife Sands, Glasgow Sands, GrimsbySands, Leeds Sands, Milton Keynes Sands, Northern Ireland Network, Nottingham Sands, Sheffield Sands,Tayside Sands, Tunbridge Wells and West London Sands.

There are many others who have been instrumental to the Why17? campaign. To all those families, staff,volunteers and supporters of Sands who have backed the Why17? campaign since its inception, you arethe driving force behind the campaign and our thanks go out to each and every one of you.

Together we canmake a difference.

Saving Babies Lives Report 2009

The report was written by Janet Scott and Charlotte Bevan.

Proofing was by Carolyn Bray, Marion Currie and Katie Duff.

Designed by Mutual-Media (UK) Ltd and printed by J. Thomson Colour Printers.

Address: Sands, 28 Portland Place, London, W1B 1LYWebsite: www.uk-sands.org Head Office: 020 7436 7940

Charity Registration Number: 299679 Company Limited by Guarantee Number: 2212082Copyright Sands 2009. May not be reproduced in whole or part without written permission, all rights reserved.

Saving Babies Lives Report1

Acknowledgements

ABBIE MAE CARDWELL ABBY CARSLAW ABIGAIL SHEPPARD ADAM CHILDS ADAM ROTHERY AIDANIRVING CRAIG AIDAN NEWTON SOPHIE MCKAY AILEEN BAKER AISLING MILES AKEEM SIRFARAZ ALANRICHARD STURGEON ALISON HANNAH MCMAHON AMALIA NICOLE DEVINE AMBER DINMAMODE TREVOR JUNIOR AMELIA KNIGHT AMELIE SAMANTHA NEWMAN AMY WRIGHT ANGEL SIMPSON ANGELJOSHUA CHILLMAID ANGELIQUE HENSON-BAILEY ANNA COKAYNE ANNABELLE LUCY KELLY ANNAMARIEHICKS ARCHIE JACOBY-KELLY ARRAN CAMERON-LYNCH BABY COYLE BAILEY CLYDE BOTHWELL BEANCROME BENJAMIN HOGAN BENJAMIN NEWBOLD BERTIE WHALE BETH CARRUTHERS BRADLEYBRUMPTON ALICE MAY LELLIOTT BRADLEY MARK LITTLE BRUCE LESLIE CALEB ALBERT BROOK CHARLEY CORDEN CHARLIE JACK SMITH CHARLOTTE RODRIGUES CHARLOTTE SEARS CHLOE KEARS CHLOE BAILEY CHLOE MEDLEY CHLOE AMBER GARBETT CHRISTOPHER SHEPPARD CIANN BOON CONNOR BARNARD DAISY LOVE DAISY CATHERINE PIDGEON DANIEL STEWART DANIEL GOULD DANIELMCDERMOTT ROBERT DAVID SCOTT DANIEL LEWIS DALTON SEREN MORGAN DAVIES KATHERINE ANNEHOOLE JON ALEXANDER CURRIE LESLEY KATHRYN CURRIE DANNY HARRINGTON DARREN KELLY DYLANO'CLERY DYLAN JAMES RUSSELL EDDIE PASKIN EDEN THOMPSON ELEANOR CHILDS REBECCA BRAY ELEANOR LEYLAND ELLA HURST GRACE ASHWORTH ELLA GRACE SHERAZEE ELLIE NEWMAN ETHANFOX ETHAN NATHANIEL MURPHY-LUCAS JUDE BRADY EVAN THOMAS WHITTAKER TYLAN GORGUN EVE ROBINSON EVELYN MAUD PORTER EVIE SACKS EWAN STOCKTON EWAN CAMPBELL EMILY GRACE REBEKAH HOOK FREYA DEACON FREYA CHAPMAN FREYA GELDART GEORGE BEANSE GEORGINANORTHROP GETHIN WILLIAMS GRACE JACKSON-FARRELL GRACIE FREARSON DANIELLE GUY GRACIENELL WALKER HABIB HUSSAIN HANS PETER BUDD THIEMANN HARMONY BANFIELD HARRIET ROOKE HARRISON DAVIES HARRY ELSTON HARRY PEART HARRY JAKE GREEN HARRY JOHN BROWN HARVEYLEE BROWN HAZEL HORNBY-EVANS HAZEL LAWRENCE HELEN COYNE HIMAT SINGH LALI HOLLYMITCHELL THOMAS DUFF HOLLY MOORE HOLLY BANFIELD HONEY ADAMS DENVER CLARK BEARPARK I MOGEN JOHNSON INES WILDIG ISAAC FITZPATRICK ISABEL SPENCER BABY SHANE ISABELLA BOEM ISABELLA LATHAM ISABELLE GILLAM JACK TIPTON JACK BUCKLEY JACK CROSS GARY SHA RPE JACK FOSTER JACOB DICK JACOB LAKE JAKE MONTGOMERY JAKE VINCENT SMITH JAMES FREEMANCLEMENTS JAMES EDGAR JAMES ARTHUR ROLFE JAMES MCCARTNEY JAMIE RUSHTON JASMINEJACKSON JENNI CLARKE JESSICA MORRIS JESSICA CORNWELL JO CHETTLE JOEY RIGG JONATHANCLACK JONNY MARTIN BAYLISS JOSEPH TANNER JOSEPH MILTON JOSEPH ANDERSON JOSHUACHAMBERLAIN JOSHUA NATHAN BASS JUN LI BUCKNELL KANAN GEORGE TAYCUR EMILY ROSE PACK KATHARINE ANNE ELLIOTT AMELIE SPEAKE KAYLEIGH HANCOX KELLY REBECCA SADLER LENNOX-GORDON KIAN WOODALL KIRSTY SPIERS KITTY CHISNALL AMY LYNAGH KORA BASSETT-HUCKSTEPP LARA BETHANY HOPE GRANT-HINES LAURA MCCAFFREY LAUREN BAKER LEAH ELIZABETH LUZDICKINSON MCDERMOTT SOPHIE STREETER SOPHIE GALE MATTHEW HALE SOPHIE MCKELVEYMCINALLY WILLIAM JOHN BUTTERFLY WARREN STEVEN KAY TEDDY BREWER THEA LEWIS-WOODHEADTHOMAS HARWOOD HEULWEN GITTOES THOMAS DAVID FORDYCE THOMAS EDWARD CORKER ELLIOTAUSTIN WILDSMITH LEE DALY TIERNAN QUIGLEY AMY CLARE BIRLEY TOBY CLARK-MORRISON EMILYNICHOLLS JENNIFER NICHOLLS JULIA NICHOLLS DIANE STANDRING TOTTIE DALGARNO-PLATT TWINSFLOWERS VICKI MITCHELL HOPE WILLIAMS WILLIAM HALL WILLIAM RADICE WILLIAM LEONARDCROSSLEY WILLOW BEGGS ZACK MILLINGTON LENI LAYCOCK LENNI SHAFFER LEO JAMES DILLONLEWIS ADDY LEWIS DENT LEWIS WILLIAM JOHN BRUCE LILY BLAND LILY GRASSO LILYA CLARK LISARUSKIN LORNA GROVES LOUISE KNIGHT LUCAS CRAVEN LUCY VICTORIA CHILD LUKE BALLINGER LUKE BURKE LUKE HARRY MCINTOSH LYDIA DYSON LYDON DALLEY LYLA HERBERT-LEWIS MADISONPAIGE BOWDEN MAISIE LOACH MALACHI DUNCAN MARI LOIS JONES HOPE REGLER HUGO SCOFFINGS MARLEY BURRELL MARTHA STANLEY-DUKE MARY ELIZABETH ROSE BUTLER FAITH ELIZABETH BAILEY-LAWTON MAX DAKERS MAX BURKE MAX WILLIAM HAYWOOD MIA HURST MIA BEAL MILLIEMOUNTFORD-SWINBOURNE MITCHELL STAMMERS MOLLY TAYLOR-BRITTAN MOLLY FRANCESMCDONOUGH MURRON CATHERINE MARGARET WATT NATALIE GUEST NENI PALACIOSNIIA MAYER NILSVERLE NOAH LAMERTON NOAH MUNGO WILSON NYAH LINTERN OLIVER TWEDDELL OLIVER JOSEPH OLIVER CHAPMAN OLIVER BOWEN OLIVER JOHNSON OLIVER ROBERT WILLSHER OLIVIA BLACKMORE-BOLEY OLIVIA GRACE GRIFFITHS OLIVIA PAIGE FROST OLLIE WARDLE OWEN NEWELL PAMELA MCGRORY PATRICK MILLAR PENELOPE JEMIMA KNIGHT PHOEBE CHURCHILL PHOEBE MCGUIRK PIP WELBURN POLA JACHEC-NEALE POPPY BATTEN POPPY-ROSE HOUSTON REESE ANDERSON RHYS JOHNSON ROBERT 'SPARKLE' PHILLIPS RONALD HISLOP RONAN FRASER ROSE FOZARD-BRADLEY ROSS IGGLESDEN RUBY SPEAKMAN-DASH RUBY WINTER SANTOS RUDY CLARKE SAI PATRICK MURPHY GULATI SAMI KHAN SAMUEL TUDOR SAMUEL NOBLE SAMUEL RICHARD OSBORNE SCARLET BONNER SERENA BARONE SHAKIRA GHANEY SHONA LENNON SKYE MARIE MOTTRAM SOFIA PETTIS SOPHIA PENN DANIEL JOHNLAWLOR SOPHIA JANE ATKINSON DAVID NEWTON MATT PROUDFOOT MARIA WOOLLEY

4 Foreword

5 Summary

7 When a baby dies

9 Introduction

11 Stillbirths

15 Intrapartum-related deaths

17 Neonatal deaths

19 Research

21 Learning lessons

22 Post mortems

23 Resourcing improvements in care

25 Working collaboratively

27 References

29 Definitions and statistics

30 What else Sands does

Saving Babies Lives Report 2

Contents

Saving Babies Lives Report3

Peter Tan with his son Jeremy TanMing Ken who was stillborn

February 12th 2005

Sands, the stillbirth and neonatal death charity,was founded in 1978 by a small group ofbereaved parents devastated by the death of theirbabies, and by the total lack of acknowledgementand understanding of the significance and impactof their loss.

Over the past 30 years Sands has supported manythousands of families whose babies have died,offering emotional support, comfort and practicalhelp. Working in partnership with healthprofessionals and service providers, we havetransformed the culture and practice ofbereavement care in the UK. Gone are the dayswhen stillborn babies were delivered and thenwhisked away before their parents could seethem, in what became known as the rugby pass.

Our Guidelines for Professionals is the referencetext for best practice when a baby dies.Increasingly Sands is recognised as aninternational leader in the bereavement field, andwe have been invited to the Far East, Australia,Africa and Europe to share our model of working.

Every parent whose baby has died wants to knowwhy it happened, and what can be done to stopother parents experiencing the same heartache.Over the years we have heard a growing numberof stories from parents, and more and moreinformation from health professionals, whichstrongly point to the fact that many perinataldeaths are avoidable.

Bereavement support is at the core of everythingthat Sands does. But we want to do more to ensurethat there are fewer bereaved parents to support.

Over the last five years, we have investedsubstantially in developing our connections withleading individual researchers and organisationsto facilitate a greater exchange of information toimprove our understanding of stillbirth andneonatal death.

In 2008 we launched our Why17? campaignwhich asks a simple question. Why, in spite ofmedical advances, do 17 babies die every day inthe UK?

In some cases we simply do not know enough yetto be able to say why a baby has died. Which iswhy Sands is raising 6 million through thecampaign to fund the research that is needed.

But increasingly, Sands believes that many ofthose deaths are potentially avoidable.

Our report Saving Babies Lives which we arepresenting today, highlights why we believe thatin many cases the devastating impact of the deathof a baby on the parents, their families and friendscould be prevented.

The overriding message from Sands and thethousands of parents who are supporting theWhy17? campaign is that the deaths of 17 babiesa day in the UK is totally unacceptable. What wewant to see is a clear acknowledgement of theseriousness and extent of the problem and a real,collaborative commitment to address theseindividual tragedies as a matter of urgency andpriority.

Neal LongChief Executive,Sands

Foreword

Saving Babies Lives Report 4

Saving Babies Lives Report5

Summary of key messages

1 The death of a baby before or soon after birth has a devastating and long-lasting impact on thefamilies left behind. A stillbirth or neonatal death should be recognised as being no less significantthan any other death.

2 In the UK, one baby in every 200 is stillborn and one baby in every 300 dies within four weeks ofbirth. 6,500 babies died in 2006. This level of death is unacceptable.

3 Stillbirth rates have remained the same for the last ten years. Stillbirths are ten times more commonthan cot deaths.

4 We need to break the taboo surrounding the death of a baby and raise awareness of this ignoredproblem. With increased funding for research and real improvements in clinical care, a significantnumber of babies deaths could be prevented.

5 In 50% of stillbirths the baby is normally formed and dies apparently for no reason; the majority ofthese deaths are in low-risk pregnancies. We need antenatal screening which effectively identifiespregnancies at risk of stillbirth, so they can be given the extra care they need. Fetal growth restrictionand reduced fetal movements are associated with stillbirth, and we need better methods to usethese indicators to identify poor fetal wellbeing.

6 Suboptimal antenatal care plays a role in many stillbirths. Maternity services are under-resourced,leading to shortages of staff and equipment. The safety of babies is suffering as an overstretchedservice is failing to ensure all babies have the personalised and safe care they need during pregnancyand labour.

7 Sick and vulnerable babies are not getting the one-to-one care they deserve in neonatal units. Unitsare understaffed and overstretched. Strategic Health Authorities must ensure their Primary Care Trustshave the necessary resources to draw up action plans to tackle the drastic shortage in neonatal nurses.

8 A serious lack of direct funding for scientific research to understand and prevent stillbirths is holdingback progress that could be made in reducing the numbers of deaths.

9 Data collection on pregnancies is limited in the UK, the exception being in Scotland. We need nationallycollated, detailed and standardised data about all pregnancies and outcomes on which to base research.

10 Perinatal post mortems can provide valuable information for parents about why their baby died, andcontribute to research. But the uptake of post mortems has fallen to 40%. Parental consent to postmortem is discouraged when there are long delays in getting results and babies have to betransported across the country, due to severe shortage of specialist pathologists. We need to doublethe number of perinatal pathologists if we are to meet even current low rates of post mortem uptake.

11 By working together, informed parents and well-trained health professionals can collaborate toidentify the risks of stillbirth and neonatal deaths, reduce those risks, and act effectively to avoidharm. Parents are powerful advocates for change to save babies lives.

Saving Babies Lives Report 6

Sands would like to see

Prioritisation of stillbirth and neonatal deaths at a nationallevel as a major health issue.

Funding for stillbirth research - a minimum of 3 million tomatch the 3 million Sands will invest over five years.

A national research strategy, bringing together all interestedparties, to reduce the numbers of babies dying.

Resources directed at improving antenatal care, with thesafety of babies prioritised in plans to raise standards.

Action to fill gaps in the knowledge and evidence needed toguide effective antenatal detection of babies at risk ofstillbirth.

Neonatal care commissioned in complete compliance withBritish Association of Perinatal Medicine 2001 standards.

Standardised data collected on all pregnancies, includinginformation about the mother, baby and care in pregnancyand labour.

Comprehensive review of every stillbirth and neonatal death,which fully incorporates the parental perspective of care.

High-standard perinatal pathology services across all regions,so that all parents have access to perinatal pathologists.

Public health messaging about the risks of stillbirth soprospective parents can make informed choices about theirown pregnancy.

Saving Babies Lives Report7

When a baby dies

This report aims to focus attention for the firsttime on the hidden tragedy of babies deaths inthe UK. Every day 17 babies die before or shortlyafter their birth.

To anyone who has not experienced a babysdeath it can be all too easy to underestimate thesignificance of this event. But the death of a baby,whether before their birth or in the daysimmediately afterwards, is no less a death thanthe death of any other child. A child who dies veryearly in their life is no less loved and cherished.

But while the grief and pain for the parents andfamily is no less intense and enduring, the deathof a baby is different to any other bereavement.When a baby dies before he or she has lived forlong, or at all, outside the womb, parents are leftwith a terrible sense of emptiness. There is noobject for their love and care. It means the end ofhopes and plans and the loss of a future. Coupleswhose first baby dies lose their identity as parents;

those with children lose a new family member. Itis hard to overstate the levels of trauma anddevastation bereaved families experience.

But all too often these feelings go unrecognisedby the wider community. Despite betterunderstanding of the significance of a babysdeath among health professionals, it is stillconsidered taboo in some way beyond the doorsof the hospital the death that no one likes tomention. Families often suffer in silence withoutunderstanding or adequate support.

If we undervalue the level of damage whichfollows a babys death, we leave bereaved familiesisolated, with their grief unacknowledged. Worse,the problem remains hidden, with little incentiveto act to prevent these deaths.

To paint a picture of just what it really meanswhen a baby dies, this report starts with thepowerful words of parents.

The personal perspective on the death of a baby

Peter, Lynn and Travis Bradywith Jude who was stillborn onJune 16th 2006

Saving Babies Lives Report 8

What parents say

Its hard to put into words. It really is devastating. I wish my baby was here to hold, feed andlook after. Instead I have empty arms and a box of ashes.

We didn't know you could feel pain like that. I think of our daughter every single day and willlive with this aching loss for the rest of my life. I do not feel whole and my family is not whole. Ihave another daughter now and whenever she does anything new I wonder what our firstdaughter would have been like.

My life has changed completely. I am functioning, I'm not depressed, I work, I have a wonderfulhusband and lovely family, I am even happy again but I will never, ever, be the same personagain. I miss my baby every second of every day and even though the pain will ease and thehurt will fade I will always, for the rest of my life, not have my baby.

We have been devastated by losing our baby. It has caused us to have no faith in what we usedto take for granted. We understand a pain so deep and raw and senseless now.

It has devastated us. Our baby was an IVF baby, conceived after three attempts. I am tearful atall times, resentful and jealous of those with babies and children. I get hurt when people saythings without thinking and I blame myself for my baby dying.

My son, who was 4 at the time, still has nightmares nearly three years on.

I cannot really find the words to describe the deep impact that the death of my daughter, Louise,has had on my family. Still, 18 years on, I am deeply affected emotionally and still grieve for mybaby, albeit behind a mask of normality.

It affected everything from that day on. I changed my job as I couldn't face going back to thesame job. We are lucky to have gone on to have two other children, who are an absolute blessing.The loss of Thomas will never leave us though and I am often caught out and reduced to tears bya memory, song, even smell, over six years on. The dawning realisation that the pain never goesaway is hard to live with. The pain lessens but it is always there, lurking just below the surface.

Its taken the smile out of us. My older son has missed out on so much love from me because Ihave been neck deep in fighting this for four years. Its changed my personality, its rocked myfaith. I cope with life now whereas before I lived it to the fullest.

It has left a huge space in our lives that we cannot fill. It feels like an isolated and private grief, as itwas only us that knew him and feels like it's only us that miss him. It feels like we can't talk aboutwhat happened, or him, or say his name as nobody wants us to.

Saving Babies Lives Report9

NumbersEvery year around 6,500 babies die before orshortly after their birth; that is one baby everyhour and a half, or the equivalent of 16 jumbo jetscrashing every year. 4,000 babies are stillborn andanother 2,500 die within a month of their birth.

These are not rare events. One baby in every 200 isstillborn. One baby in every 300 dies in the first fourweeks of life, the majority within the first few days.

Many people have experienced the devastatingdeath of their baby. If we ask our immediatefriends and colleagues, almost all of us discoverwe personally know someone who has had astillbirth or whose baby has died shortly afterthey were born. But these individual tragedies areinvariably hidden. The death of a baby is anuncomfortable subject which people prefer toavoid, but that doesnt mean it isnt a serious andurgent problem.

Compare the mortality figures to other causes ofdeath: road traffic accidents kill around 3,000each year, and we are horrified and wantsomething done. Yet there are twice as manybabies dying and the situation is unnoticed.

PreventableShockingly, a significant number of these deathsmay be avoidable. The perception that stillbirthsand early baby deaths are sad but inevitableevents, that these babies were somehow meantto die, is far from the truth. Although there arecertainly cases of stillbirth where nothing couldhave been done, there is an increasing body ofevidence and opinion that many of those livescould be saved.

In the UK a combination of problems means wefail to identify many babies who are at risk, andto ensure their best possible chance of life:

We lack knowledge, data and research intowhy babies die.

We have no reliable way to predict whichpregnancies are at risk of stillbirth or deathearly in life.

There is little awareness of the extent of theproblem or what the risks are.

We dont have the resources in maternity careto ensure optimal care for every baby.

Above all there is no political will to make thingschange.

Introduction

Mistaken beliefs

Pregnancy has always been risky, babies have always died. Better maternity care has improved mortality rates for babies and mums. But, while all other mortalityrates have dropped, the stillbirth rate hasnt changed significantly for ten years.

A baby doesnt really count because you didnt get to know it. For the parents, their baby is every bit as real and loved as any other child. It is precisely the realisation ofthis love, and that parenting begins well before birth, that makes the death so hard to bear.

Never mind. You can always have another one.A subsequent child brings joy of course, but does not replace or compensate for the child that is notthere. For some couples, having another baby is not a possibility.

Its just one of those things.No it isnt. Many babies die because their failure to thrive was not spotted, or the right action was nottaken. With better care and more research, deaths could potentially be avoided.

Nothing can be done.We hope this report will show that action can and must be taken to save babies lives.

Saving Babies Lives Report 10

The costsThe death of a baby at birth is a tragedy. Parentsare left devastated, their lives changed forever.The trauma of losing their baby damages physicaland mental health, relationships, careers andincomes.

In our survey of parents, 81% said they suffereddepression after the death of their baby. 39% saidit affected their physical health, and 25% saidthey lost earnings because they had to changejobs or career (1).

The ripples of such damage have far-reachingconsequences.

A stillbirth in the family has repercussions forsiblings who suffer from the dented familydynamics and the difficulties their parentsexperience. Grandparents, wider family and friendsare often profoundly affected too. 33% of ourparents said their marriages or relationshipssuffered as a result of the death of their baby; 80%said it had an emotional impact on the wider family.

There is invariably an impact on doctors andmidwives and any other service providers whohave been involved. Some may feel they have failedin their professional role, or may simply be deeplydistressed by being part of such a tragic event.

Meanwhile funding which could be going intoresearch or resourcing better maternity care isbeing used to settle litigation claims.

Why are these deaths ignored?It is hard to draw resources and attention tostillbirths and neonatal deaths if they areperceived to be just one of those things. There isalarmingly poor awareness at all levels of theactual numbers, impact and costs of these deaths.

Society - in our survey of the general public 75%of people were very surprised by the numbersof babies dying. They were more concernedabout Downs Syndrome and cot deaths thanstillbirths, which are much more common.

Prospective parents parents are not awareof risk factors and dont know what level ofcare they should expect, or when they shouldraise concerns.

Health care provision the risk of baby deathis underplayed, with a lack of focus onstrategies for prevention.

Funders there are many competingdemands for health care resourcing andresearch funds. Stillbirth, which is politicallyunfashionable, is ignored as a priority.

A cohesive approachThere is no co-ordinated focus on reducingperinatal death.

All the relevant disciplines, including clinicians,researchers, service providers, funders, regulatorsand parents, have a stake in how to reduce thenumbers of deaths, with their own professionaland personal perspectives on where theproblems lie and what the solutions are. But weneed a co-ordinated approach to the issueswhere all the elements are drawn together into acohesive strategy.

Action nowTo the parents whose baby has died, themessages in this report could not be moreimportant and more urgent. Behind the statisticsare real, loved and desperately missed babies.

We believe it is unacceptable to be complacentabout each of these babies. We are calling for thepolitical will to prioritise the lives of babies as anurgent health issue.

We believe it isunacceptable to be

complacent about each of these babies.

Saving Babies Lives Report11

Stillbirths

In the UK one baby in every 200 is stillborn. Thatmakes a stillbirth ten times more likely than a cotdeath. Stillbirth rates have remained unchangedfor the last ten years, even rising between 2002-2005. In contrast, infant mortality has improvedand rates of cot death have dropped dramaticallyover the last two decades.

Despite reports from as far back as the mid 90s thatthese deaths in pregnancy could potentially bereduced, stillbirths have remained comparativelyneglected.

CausesIn the UK by far the largest proportion of stillbirths- 50% to 60% - are classified as unexplainedwhere no cause of death is found. After this themost common causes of stillbirth are: placentalproblems, congenital abnormalities, intrapartumcauses, maternal disorders, pre-eclampsia, andinfection(2).

Who is at risk?The average risk of stillbirth is 1:200. But the risk inan individual pregnancy is increased when themother belongs to a group at higher risk of

stillbirth. Any combination of a number of riskfactors multiplies the risk even further. For example,a mother who is over 40 years old, experiencing herfirst pregnancy, where the baby is over 37 weeksgestation has a risk of stillbirth closer to 1:120(3).

Compare this to risks of Downs Syndrome. In theDepartment of Healths Pregnancy Book, a DownsSyndrome risk of 1:250 is described as high-risk(4). We would like stillbirth to receive at leastthe same attention as Downs and cot deaths.

Risk factors such as obesity, age, ethnicity, obstetrichistory and maternal disorders must be taken intoaccount when deciding what kind of antenatalcare each pregnant woman should have. This hasto be continually assessed and adapted, if it needsto be, throughout the pregnancy. At Sands we hearmany tragic personal stories from parents wherethis continues not to happen.

Health professionals caring for pregnant womenneed to be more aware that stillbirth is a real risk,and they should all know what factors increasethat risk for an individual mother. Safety and riskawareness should be a more important part ofprofessional training for all obstetric staff.

Mothers age: Advanced maternal age increases the risk of stillbirth. Women over 40 are around twice as likely to

have a stillborn baby, and are more likely to have a stillbirth than a baby with Downs Syndrome. Teenage mums are also at an increased risk of stillbirth. Mothers health: Obesity: a quarter of mothers whose babies are stillborn have BMIs over 30. Some medical disorders are associated with a greatly increased risk of stillbirth. These include

diabetes, hypertensive disorders, lupus, thyroid problems, infections and renal disorders. Smoking is a significant risk factor for stillbirth, with rates around double those for non-smokers.Ethnicity: Stillbirth rates amongst women from black or Asian ethnic groups in the UK are higher than amongst

white women.Social factors: Stillbirths increase in areas of social deprivation; rates are 1.7 times higher in lower social groups. Pregnancy: Nulliparity: 40% of stillbirths happen in a first pregnancy. Multiplicity: the risk of stillbirth is approximately 3 times higher for multiple pregnancies compared

to singleton pregnancies. A previous stillbirth, previous growth restricted infant and previous obstetric complication are all

associated with increased risk of a subsequent stillbirth. Small baby: growth restriction is associated with adverse outcome, at any gestation. Post term: risks of stillbirth are higher after 41 weeks of pregnancy.

Saving Babies Lives Report 12

Detection of at-risk babiesMost pregnancies are straightforward andantenatal care strives to de-medicalise a naturalprocess. While this approach may be right forpregnancies in which all goes well, pregnanciesat risk of stillbirth are still being missed becausethe current system often fails to detect andmanage problems.

National Institute of Clinical Excellence (NICE)antenatal care guidelines(5) highlight conditionsin pregnancy that require extra clinical care. Whena high-risk pregnancy is flagged the likelihood ofa baby dying in pregnancy is low. In fact the riskof stillbirth is higher in low-risk pregnancies: low-risk has become the new high-risk.

With 4,000 stillbirths a year, we need to build intoroutine antenatal care a much greater awarenessthat stillbirths can be reduced if at-riskpregnancies are recognised early on and giventhe right care.

I have seen huge strides in the care of high-risk mums with high-risk babies, andhigh-risk mums with low-risk babies areeasy to care for. And low-risk mums withlow-risk babies are VERY easy to care for.But the real problem is low-risk mums withHIGH-risk babies that are not beingidentified before their demise.Professor Jim Dornan, Head of Fetal Medicine

Department, Queens University, Belfast

Unexplained stillbirthsAn unexplained stillbirth is when an apparentlyhealthy, normally formed baby dies for no clearreason. You might call it a cot death in thewomb. Half of stillbirths in the UK are classifiedas unexplained, suggesting that these deaths area mystery. But unexplained does not mean thesedeaths are inevitable.

The Confidential Enquiry into Stillbirth andDeaths in Infancy (CESDI) reports during the 90sfound that the largest area for improvingperinatal mortality was unexplained antepartumstillbirth(6) (7). If these otherwise healthy babies canbe identified before they die, there is potential tosave their lives.

But the majority of unexplained stillbirths occurin low-risk pregnancies, suggesting that routineantenatal monitoring is failing to pick up thesebabies who are in fact at risk.

At present the only intervention for an unbornbaby who is not thriving is early delivery. Forclinicians making decisions about a pregnancy,this means having to balance the risk of stillbirthand the risks of prematurity for the baby. However,many unexplained stillbirths occur at gestationswhen the risks of early delivery are lowest.

Carolyn and Grev Bray withtheir daughter Rebecca who

was stillborn on June 4th 2002

Saving Babies Lives Report13

The risk is that unexplained may beregarded as synonymous with unavoidable,which could lead to the complacentconclusion that little can be done aboutthem. Professor Jason Gardosi, Director of the PerinatalInstitute, British Medical Journal, October 2005

Screening for at-risk pregnanciesAt present there is no effective screening test forpregnancies at risk of unexplained stillbirth. It ispossible that biochemical indicators of placentalfunction early in pregnancy might lead to asimple blood test for stillbirth, similar toscreening tests for Downs Syndrome(8). If at-riskpregnancies could be accurately identified earlyin pregnancy, care could be better targeted atthose who really need it. Babies at risk of termstillbirth could be scheduled for routine earlydelivery, while minimising the number ofinterventions in pregnancies which are not at risk.

Growth restrictionA baby is considered small for their gestationalage if they are below the 10th centile of growth.Stillbirth is associated with poor growth in thebaby in around half of all deaths, and in two-thirds of unexplained stillbirths(2). The PerinatalInstitute in Birmingham estimates that a babywho is smaller than he or she should be is 5 to 11times more likely to die(9).

Poor growth can indicate that something may bewrong, but current standard antenatal tests areidentifying as few as 15% to 30% of babies whoare small(9).

Work in the Perinatal Institute, Birmingham,suggests that changes in antenatal care couldprevent more than half of stillbirths with growth-restricted babies. Their protocols for measuringgrowth and referring babies for furtherinvestigation have been adopted by hospitals inthe West Midlands, with hopeful signs of areduction in perinatal mortality.

Routine antenatal screening for growth usingfundal height measurements and ultrasoundvaries in different maternity units around thecountry. There is still insufficient evidence onwhich to base national guidelines for monitoringgrowth, or protocols for referring babies to extracare. We need more research to maximise theeffectiveness of these screening tools inindentifying small babies.

The latest NICE antenatal guidelines call forfurther research saying: Poor fetal growth isundoubtedly a cause of serious perinatalmortality... Unfortunately, the methods bywhich the condition can be identifiedantenatally are poorly developed or nottested by rigorous methodology. However,existing evidence suggests that there maybe ways in which babies at-risk can beidentified and appropriately managed toimprove outcome, and this should form thebasis of the study. (5)

The eighth CESDI report found that 45% ofall stillbirths were associated withsuboptimal care, including failure torecognise the high-risk woman at booking,and the report recommended betterscreening for intra-uterine growthrestriction (IUGR)....Despite this, screeningfor IUGR has not changed.

Professor James Drife, Expert Reviews,Obstetrics and Gynaecology, 2008

Fetal movement A decrease in fetal movement is associated withpoor growth and with antepartum stillbirth. Butbecause of a lack of evidence, current guidelinesadvise against routine counting of fetalmovement, or kick counting.

Recent studies are trying to change this view.Large numbers of bereaved parents report thatthey were concerned about their babysmovements prior to their babys death but theywaited 24 hours before contacting their midwife,not realising it might indicate something wasseriously wrong(10) (11). Mothers can be very tuned-into their babys patterns of behaviour (75% of oursurveyed mothers said they felt their babysmovements slow down or change hours or daysbefore they died) and this opportunity formonitoring should not be ignored.

There are no national guidelines for respondingto reported decreased fetal movement, withevery maternity unit drawing up their ownprotocols. Monitoring with cardiotocographs(CTGs, or heart monitors) as a response mayactually give dangerous false reassurance.

More research is urgently needed to developeffective tools to manage reported reductions infetal movement.

Quality of careThe serious problems of safety in maternity carein the UK are well documented, with a series ofrecent reports highlighting the poor standards ofcare which result from staff shortages and poormanagement(12) (13) (14). Stillbirth is often a lowpriority in discussions of maternity standards, ornot mentioned at all. But suboptimal care, drivenby poor resourcing, is estimated to contribute toadverse outcome in around 40% of unexplainedstillbirths(7).

Understaffed midwifery units meanscontinuity of antenatal care which is knownto improve pregnancy outcome is often notpossible. 42% of parents in our survey said theyhad not had time to develop a positiverelationship with their midwives, and 44% felttheir midwife was not familiar with their notes.

Parents feel rushed through antenatalappointments where they feel unable to raiseissues of concern. 64% of our parents had thisexperience.

There are shortages of trained ultrasound staffand ultrasound equipment, which meanssome high-risk pregnancies are not beingproperly screened.

Inappropriate grades of staff are involved incare. Sands parents report being looked afterby student midwives without the experienceto give the necessary care.

There is a shortage of consultants available togive expert care when required.

Communication failures between staff andbetween different departments, lead to loss ofvital information and delays in responding tohigh-risk situations.

Overstretched units cannot release staff orcannot afford to fund training for midwives toupdate their knowledge and skills.

Standards of care and resourcing vary around thecountry. But all parents should feel they can relyon their local services to offer the safest care fortheir baby. We need the right resources, in theright place, at the right time. When a service isunder pressure, errors happen, and babies die asa result. This is unacceptable.

Listening to mothersIn our survey parents repeatedly emphasised thatthe mothers views and instincts about her babyswelfare should be listened to. 45% of parents whohad an antepartum stillbirth felt something waswrong prior to any medical diagnosis of aproblem. Too many women reported being toldthat their fears for their pregnancy were

unfounded and were sent home, only for theirbaby to die soon afterwards. When asked whatthey would like to see change in the waypregnancies are managed, many parents saidtheyd like to see a change in the whole cultureof antenatal care, to be more collaborative.

Treat every woman as an individual and notas if we are on a conveyor belt. Take time tolisten and hear the concerns that womenhave and not to dismiss us. We were told thatif we had been monitored more closely ourson would be with us. I think this says it all.

Take pregnant mothers more seriouslyrather than telling them they worry toomuch.

I would like them to concentrate less onnormal procedure and more on individualcare.

Listen to parents, really take into accountthat each woman knows her own body andis not trying to question anyone'sjudgement but needs her concerns heard. Iwas completely powerless and evenbegging (for early delivery) did not work. Itis that lack of voice and right to be heardthat makes a preventable loss so filled withextraordinary anger as well as sadness.

Saving Babies Lives Report 14

Monday, 17 babies

JUDE BRADYDANIELLE GUYREBECCA BRAY

LESLEY KATHRYN CURRIEJON ALEXANDER CURRIE

THOMAS DUFFMATTHEW HALE

BABY SHANEEMILY NICHOLLS

JENNIFER NICHOLLSJULIA NICHOLLS

HEULWEN GITTOESELLIOT AUSTIN WILDSMITH

AMY LYNAGHALISON HANNAH MCMAHON

ROBERT SCOTTALICE MAY LELLIOTT

Saving Babies Lives Report15

Intrapartum deaths include stillbirths andneonatal deaths that are directly related to eventsoccurring from the onset of labour until birth.

In 2006 there were 434 intrapartum-relatedstillbirths and neonatal deaths These were alllabours which started with a live and apparentlyhealthy baby, but ended with that baby dying.The risk of intrapartum-related deaths is virtuallyunchanged since 2000(2).

Half of all intrapartum-related deaths areunexplained. This is devastating for parents whocan see no reason for their babys death. Researchis urgently needed to identify the cause of theseunexplained deaths and to understand how theymay be avoided. The proportion of babies whoare small for their gestational age is higher inboth intrapartum stillbirths and neonatal deathsthat are related to labour and we need tounderstand what part this plays.

We lost our baby because I was in activelabour with a premature baby for two hourswith no care or checks made. The hospitaladmitted it was a mistake.

Events during deliveryOf intrapartum deaths for which a cause isidentified, most are related to catastrophic eventsduring delivery. These include placentalabruption, cord accidents, malpresentation andruptured uterus and maternal infection.

Labour is a critical time. The need to improvesafety in childbirth is discussed in a number ofrecent reports(15) (16). For parents who have losttheir baby the perspective is clear; safety of babyand mother should override all otherconsiderations.

I cant describe the shock and pain. Id goneto hospital in labour and it never occurredto me I might not be able to take my sonhome. It was a nightmare, and still is.

In the CESDI report in the 90s into intrapartumdeaths(17), avoidable factors were found in threequarters of cases. The report pointed out failuresin identifying problems, in intervening, and incommunication. But suboptimal care continuesto contribute to deaths ten years on.

As with care throughout pregnancy, there is hugevariation in standards of care.

Issues of concern include:

Inadequate staffing levels on labour wardsduring busy periods and at night.

Delays in responding to problems, orinappropriate action.

Failures to adequately supervise junior orinexperienced staff.

Lack of consultant cover for high-risk cases onlabour wards, particularly during the night.

Need for more training of staff for high-risksituations.

Need for improved teamworking andcommunication between staff.

Failure to consider stillbirth and neonataldeaths as triggers for reporting a seriousindecent.

Need for audit. The deaths of babies in labourshould be investigated as maternal deaths are,and lessons learned.

It is intolerable that babies may be dying whoselives might be saved with better standards of care.

Only through relentless focus on standardsand continuing research and investigationinto cases of fetal loss can women continueto enter childbirth, knowing that it is trulyas safe as it can be. Chief Medical Officers Annual Report 2006,

500 Missed Opportunities

Intrapartum-related deaths

Saving Babies Lives Report 16

They were under so much pressure thatthey had to concentrate on day to dayissues with little spare time to attendtraining courses, risk meetings or clinicalaudit meetings....there has been pressure onbed occupancy, with some midwivesworried that mothers and babies werebeing sent home too early to make way forthe next delivery. Healthcare Commission, reviewing maternity

care in Milton Keynes General Hospital(18)

My babys distress was not picked up untilit was too late to save him. I did not have amidwife with me during my labour and didnot feel supported when I was havingproblems. This, I feel, was due to there notbeing enough experienced and caringmidwifes on duty to look after everyone onthe ward that day.

I had 42 weeks of a reasonably normalpregnancy then a labour which stopped andthen nothing. Our beautiful daughter lost tous forever. I feel guilt (as the fault was in mybody), anger (at the substandard care), pain,tears. This will stay with us forever.

A failure to sustain minimal midwiferystaffing levels..prevented support andguidance being available for junior andinexperienced midwives, and whencomplicated cases were managed byinexperienced and unsupported staff,especially during heavy workloads, itresulted in accidents waiting to happen.

Brenda Ashcroft, Lecturer of Midwifery,University of Salford

Tuesday, another 17 babies

ALAN RICHARD STURGEONHARRY ELSTON

MATT PROUDFOOTLAURA MCCAFFREY

JENNI CLARKENOAH LAMERTON

THEA LEWIS-WOODHEADANNABELLE LUCY KELLY

GEORGE BEANSECHARLIE CLIFFORD SMART

LENNI SHAFFERFREYA GELDARTAMLIE SPEAKE

OLIVIA PAIGE FROSTSOPHIE MCKELVEY MCINALLY

MALACHI DUNCANFREYA CHAPMAN

Saving Babies Lives Report17

Neonatal deaths

In 2007 around 82,000 babies in the UK neededspecialist hospital care when they were born.Eleven percent of all babies born require somelevel of neonatal care and the neonatal periodhas one of the highest rates of mortality of anyperiod of life with 70% of infant mortalityoccurring in the first 28 days of life.

Medical techniques for caring for sick andpremature babies have made enormousadvances in the past twenty years. This meansthat greater numbers of very small babies arebeing born alive and surviving. However, around2,500 babies die each year in the neonatal periodand the services that care for them both beforeand after they are born are still far from optimal.

Antenatal careIn some cases, suboptimal care before the babyis born plays a role in a babys neonatal death.Babies whose wellbeing is not properlymonitored either before or during labour, wholack oxygen and are delivered too late, may betoo sick by the time they are delivered to survive,and die within hours or days of being born.

Tomorrow is my eldest son William's fourthbirthday. Arriving at Intensive Care with himas a very sick baby was terrifying. Leavingwithout him after he died was devastating.As we think about his all too short life, theNICU staff who cared for him form a largepart of our memories and will always holda special place in our hearts.

One-to-one careThe British Association of Perinatal Medicine(BAPM) states(19) that sick and premature babies inintensive care need one-to-one nursing as aminimum. But only 14 out of 50 intensive care unitsin the UK say they are able to provide this(20). TheRoyal College of Nursing and other keystakeholders(21) are calling for babies to receive thesame level of care adults receive in intensive care.

National shortage of neonatal nursesIn order to meet minimum standards of care, asset out by BAPM, a further 1,700 neonatal nursingposts need to be filled.

Cot capacityThe BAPM report states that services should beplanned for average occupancy of 70%. Accordingto Bliss survey of the UKs neonatal units almost athird of all units worked at 100% capacity or more.

Closure of unitsBliss report shows that many units often closedue to lack of specialist nursing staff, with only4% of units achieving recommended staffinglevels(22). While medical and technologicaladvances, over the past 20 years, have resulted inimproved rates of survival for premature and lowbirth weight babies, funding for staff and traininghas not kept pace with demand(23).

TransfersThese are a necessary part of neonatal care andthe introduction of neonatal networks hasimproved the way transport is co-ordinated. Babiessometimes need to be moved so they can get thespecialised care they need, or moved back to a unitcloser to home. However, Bliss research hasidentified that on average three babies every dayare transferred between hospitals because of alack of capacity or staff shortages. This means thatfamilies may be split up and have to travel longdistances. The emotional and financial costs can besevere and this should not be happening.

Clare and Wayne Roberts with their children anddaughter Tilly who died February 22nd 2008

Saving Babies Lives Report 18

TrainingThe Royal College of Nursing and otherstakeholders are currently working on a UK-wideframework for the education and training ofneonatal nurses. But this framework must beadopted in order to be effective.

Babies are entitled to the same level ofnursing care as adults and children inintensive care. Anything less than one-to-one nursing for babies in intensive care isunacceptable...The care of our mostvulnerable babies continues to becompromised by a lack of qualifiedneonatal staff and the recruitment andtraining of more nurses must be a toppriority for every Trust and Health Board.

Andy Cole, Chief Executive, Bliss

Wednesday, another 17 babies

LAUREN BAKERGRACE JACKSON-FARRELL

MARLEY BURRELLSOPHIA PENN

HOPE WILLIAMSDANIEL GOULD

ELEANOR CHILDSKIRSTY SPIERS

EMMA LOUISE WHITTINGTONADAM STEPHEN HOWITT

ISABELLA BOEMCHARLEY CORDEN

AMALIA NICOLE DEVINECHARLIE JACK SMITH

JESSICA MORRISTREVOR JUNIOR

ZACK MILLINGTON

Erin Bowditch born August 5th 2008,died aged 34 days

Saving Babies Lives Report19

Research

Research in the area of stillbirth and early infantdeath has attracted low levels of funding fromstatutory and other funders. Scientists andclinicians who work in this field passionatelybelieve that perinatal mortality can besignificantly reduced if the research work isfunded and the outcomes incorporated intoclinical practice.

There are pockets of excellent research workaround the UK and internationally, but muchhigher levels of funding are needed. A nationallyco-ordinated and funded research strategy willgo a long way to reducing stillbirths andpremature births.

StillbirthsUnderstanding the causes of stillbirths

The causes of stillbirths, particularly unexplainedstillbirths which account for half of all stillbirths,are poorly understood. Placental function isthought to play a big part in many unexplaineddeaths, as well as in other causes of stillbirth,including pre-eclampsia and abruptions. Butthere is little detailed understanding of howthese mechanisms work. Scientific research couldlead to a clearer understanding of the underlyingbiophysical processes and is desperately neededif tests and preventative interventions are to bedeveloped.

Screening for stillbirthAn effective population-based screening testwhich accurately predicts which pregnancieshave a high risk of ending in stillbirth could havea huge impact on stillbirth numbers. There ispotential to develop such a test, but if work likethis is to succeed, funding for further researchand large scale trials are now urgently needed.

Underpinning guidelines for clinical care We can only adapt antenatal care to help preventdeaths if we have a full evidence base. Many riskfactors for stillbirth have been identified, but weneed further work to improve understanding ofhow risk should determine clinical care. As yet notenough is known about how best to use existingtests of fetal wellbeing, including Doppler andultrasound, to identify when a baby is at risk. Moreresearch is needed to determine how thesescreening tools can most effectively be used todetect at-risk pregnancies in the generalpopulation.

In-utero treatment At present there are limited options forintervening to prevent stillbirth other thandelivering the baby. But therapies which canimprove fetal wellbeing in-utero could clearly beof great benefit, particularly at gestations whenearly delivery is more risky. We need to supportresearch into treatments which could have ahuge impact on preventing deaths.

Saving Babies Lives Report 20

Prematurity47% of neonatal deaths are related toprematurity, and the incidence of prematurebirths has changed little in recent years(2).Strategies for preventing deaths are hamperedby a lack of knowledge and research needs to betargeted at:

Understanding the biological processescausing premature births.

Improving understanding of who is at risk ofprematurity.

Improving diagnosis of premature labour anddeveloping new treatments to delay labour.

Developing treatments to prevent prematurelabour.

DataResearch needs data, but historically only limitedpregnancy-related data has been collected inEngland, Wales and Northern Ireland. This isnt thecase for Scotland where detailed informationabout pregnancies and outcomes is available. Ifwe are going to help inform research, we needdetailed, standardised data to be gathered on allpregnancies, across the UK, and collated centrallywhere it can be made available to researchers.

Stillbirth is a major problem which isrelatively ignored. Key priorities are todevelop methods which identify women athigh risk of stillbirth, followed by trials ofinterventions to determine how the risk canbe reduced.

Professor Gordon Smith, Department ofObstetrics and Gynaecology,

Cambridge University

When I first came to Sands I had a lot ofquestions that needed answering and Iwanted to know what research was beingdone. For many of us, part of thebereavement journey is this desperate needto know that something is being done, thatresearch is underway, that we are not beingignored. It is amazing to see Sands nowpushing the research agenda forward. Whoelse is going to do it?

We need a nationallyco-ordinated andfunded researchstrategy to reducestillbirths andpremature births.

Thursday, another 17 babies

ETHAN FOXADAM ROTHERY

AMY CLARE BIRLEYBRUCE LESLIELUCAS CRAVENSAMUEL TUDOR

DIANE STANDRINGWILLIAM JOHN

HANS PETER BUDD THIEMANNLILY BLAND

MITCHELL STAMMERSOLIVER TWEDDELLBENJAMIN HOGANLEO JAMES DILLON

PIP WELBURNTHOMAS HARWOOD

HELEN COYNE

Saving Babies Lives Report21

Learning lessons

When their baby dies parents want to know thatthe cause of their babys death has been fullyinvestigated and that any lessons learned are usedto improve the safety of babies lives in the future.

But the level of investigation and review variesaround the country. Some parents feel that toolittle attention was paid to their babys death thatit was brushed aside, that failures were not openlyexamined and nothing changed as a result. In ourparent survey 20% were dissatisfied with the effortthat was made to explain as fully as possible whathad happened.

Many parents simply do not have the energy topursue answers; others are driven to initiatecomplaints procedures in an effort to highlightmistakes and ensure other parents do not haveto go through the same tragedy. But it shouldnever be left to grieving parents to force hospitalsto look at what has gone wrong.

We are calling for every stillbirth or early neonataldeath to be reviewed with the same rigour as anyother child death.

Every death should be examined with a view tounderstanding fully the circumstances which ledto the death so that any avoidable factors can beidentified. There has to be agreement onstandards for review used in all hospitals, withresourcing to support the process.

Confidential enquiriesA confidential enquiry seeks answers rather thanlaying blame. In the 90s CESDI carried outconfidential enquiries into antepartum andintrapartum stillbirths(6) (7) (17), and identified keyareas for improving practice. But these enquirieshave stopped since the formation of theConfidential Enquiries into Maternal and ChildHealth (CEMACH) which has less funding to covera far wider remit of work. We would like to seeresources to enable a return to enquiries into allstillbirths, in particular those which areunexplained.

Implementing lessonsWhen failures are identified, changes in practicemust be implemented as a result. This does notalways happen. The CESDI reports were written inthe 90s but the same suboptimal care issues existten years later. We need to take the reports off theshelves and make sure the lessons are used.

Weve just had the third anniversary of mybaby boy's death and have issuedproceedings in the High Court against theTrust. Our original complaint was ignoredand eventually the Healthcare Commission- the healthcare watchdog - had to step inand force them to investigate what wenton. Litigating is not the easy option but itwas the only way to get accountability. Allwe wanted was for the Trust to say sorry, totell us that they value our son, to make surethat this would never happen again.

Litigation casesThe vast majority of parents who go to litigationare seeking an admission that something wentbadly wrong and an assurance that it wonthappen again. Very few are motivated by financialpayouts.

Litigation can highlight failures in care and leadto change. A recent report from Foot AnsteySolicitors(24) analysed 20 negligence cases andfound common areas of negligent care: errors inmonitoring high-risk pregnancies, often duringperiods when staffing shortages affected qualityof care.

But litigation cases are just the tip of the iceberg,representing the extreme end of the spectrum offailures of care. There are lessons to be learnedfrom all deaths, whether serious mistakes weremade or not.

When a service is under pressure, errors happen, andbabies die as a result. This is unacceptable.

Saving Babies Lives Report 22

Post mortem

Post mortems can provide important informationabout a babys death and make a significantcontribution to research. In up to 40% of cases thepost mortem identifies important newinformation, including the cause of death when itwas not known. The results can inform families ofthe risks of a recurrence in a future pregnancy andguide the management of future pregnancies,potentially preventing another death.

But in the UK uptake of post mortem examinationshas fallen to less than 40% of deaths(2). In the WestMidlands, which has the highest rates of perinatalmortality in the UK, the rate is 30%.

In our survey, the reasons parents gave fordeclining a post mortem included: worries aboutwhat would happen to their babys body; a beliefthat no further useful information would be found;and a feeling that they would have to wait too longto have their babies body returned to them. 30%of parents who didnt have a post mortem saidthey would have done so, if they had thought apost mortem would provide some answers.

Despite evidence to the contrary many parents, itseems, do not realise that post mortems can behelpful. But without information from post mortemexaminations of the baby and the placenta,important information is lost to individuals andresearch into causes of death is hampered.

In our Guidelines for Professionals Sands makesrecommendations about how to communicatethe necessary details about post mortems toparents after a death. We hope this will helpparents make the difficult decision as to whetherto consent to post mortem or not.

But even if uptake of post mortems improves,there is a severe shortage of specialistpathologists to do the work. To cope with eventhe current low rates of consent we need todouble the number of perinatal pathologists. Thismeans there are delays in getting results andbabies bodies are transferred across the country,making it even less likely parents will consent to

a post mortem. In some cases perinatal postmortems are carried out by general pathologists,or worse still post mortems not even offered toparents because services are so stretched.

As a matter of urgency efforts should be made toensure perinatal pathology services are availablein all areas of the country, so that post mortemexaminations of babies and placentas can beperformed quickly, and to a high standard, aftera babys death.

Of course the consultants are not evenlyspread so some areas have no or minimalaccess to perinatal pathologists, such as theSouth West and parts of Yorkshire, whilstothers are better off...This means either postmortems are not done or they are done by general pathologists with littleunderstanding of what they are looking for.

Dr Phillip Cox, Perinatal Pathologist,Birmingham Womens Hospital

Friday, another 17 babies

EVIE SACKSLEE DALY

SAMUEL RICHARD OSBORNEMAX DAKERS

SHONA LENNONWILLIAM LEONARD CROSSLEY

JAMIE RUSHTONDAISY LOVE

JASMINE JACKSONASAHI JAMES BIRD

LISA RUSKINBABY COYLE

DARREN KELLYKATHERINE ANNE HOOLE

PHOEBE CHURCHILLEWAN CAMPBELL

THOMAS DAVID FORDYCE

23 Saving Babies Lives Report

The loss is immense. You are allprepared for a new baby coming intoyour life and to leave the hospital with abox of handprints is heartbreaking.

Saving Babies Lives Report 24

Resourcing improvements in care

Lack of resourcing is repeatedly blamed for lowstandards in maternity care. The government hasrecently increased funding for maternity services.But it seems that this funding is not necessarilyreaching maternity units and that resourcing onthe ground has not benefited services in allTrusts(25).

CommissioningNewly implemented commissioning structuresbetween the Primary Care Trusts (PCTs) andhospital trusts have been evolving to meet newgovernment structures.

While this brings more focus to what is requiredfrom maternity services in each hospital,contracts may omit any proactive remit to reduceperinatal deaths. An issue that is not highlightedin a contract for funds is less likely to attractspecific focus or resources.

As the contracts come into place hospitals cannegotiate additional funds for posts or for focusas they see fit. However, many hospitals seecontract negotiations as being driven by the PCTsand only a few have seen the opportunitiesprovided by being able to focus on local issues.

TariffsIt is unclear what is or is not included in the tariffspaid to trusts for obstetric services, with a greatdeal of room for interpretation on whether or nottariffs have been adjusted to allow for thefunding of quality improvements. For neonatalcare there is no nationally mandated fundingsystem and health economies are left to maketheir own local arrangements which leads to aninevitable variability in the level of care provided.

Litigation costsIn the year 2006 to 2007 the NHS LitigationAuthority paid out 579.3 million in connectionwith clinical negligence claims(26). In 2010 thatfigure is set to rise to 700 million. More than halfof these sums are for maternity-related claims. Thismoney comes directly from the Trusts, whosepremiums to the Clinical Negligence Scheme forTrusts substantially increased last year(27). This willaffect resources put aside for desperately neededimprovements in maternity units. If a fraction ofthis money was spent on improving services,babies lives might be saved and the emotionaland financial costs of litigation avoided.

The Authority is very concerned thatmaternity claims continue to be such amajor issue. The emotional and financialcost to families is clearly enormous butthere is also a cost to taxpayers and to theNHS as a whole. It is essential that all theorganisations involved in this field worktogether to learn from experience and toreduce the incidence of negligence, loss oflife and harm to babies.

Dame Joan Higgins, Chair of the NHS Litigation Authority

Saturday, another 17 babies

HONEY ADAMSAMELIE SAMANTHA NEWMAN

LENI LAYCOCKSEREN MORGAN DAVIES

CHARLOTTE SEARSDANIEL MCDERMOTT

OLIVER ROBERT WILLSHERBENJAMIN NEWBOLD

EMILY GRACEETHAN NATHANIEL MURPHY LUCAS

BETH CARRUTHERSWILLOW BEGGS

STEVEN KAYJONATHAN CLACKKITTY CHISNALLLOUISE KNIGHT

ROSS IGGLESDEN

Saving Babies Lives Report25

Working collaboratively

Chris and Nichola Wildsmith with their sonElliot who was stillborn on July 18th 2007

Parents have the greatest stake of all in thewellbeing of their baby but we think we arekeeping them from harm by keeping them in thedark. We are not.

At Sands, parents tell us over and over again thatthey had no idea stillbirth was even a possibility;that they did not know there were factors whichcould increase their personal risk; and thatbecause they were unaware of the risks they werenot alert to signs that their baby was in trouble.

Among parents in our survey who had highblood pressure, half were not told that thispresented any risk. Among those who wereobese 76% were not told of any associated risk,while 46% of parents who had diabetes were notinformed the condition posed a risk.

Good, clear balanced information about the risks topregnancy is not scaremongering. Already, as partof routine antenatal care, parents make seriousdecisions about the risks and consequences ofDowns Syndrome. It is the responsibility of healthcare porfessionals to be honest and open withparents, so that they can make decisions abouttheir own babies.

Had I known that having a small babymeant that I was five times more likely tohave a stillbirth, I would have reacted muchmore decisively. Instead I stayed at homeand took pain killers even though I couldbarely walk, because thats what Id beentold to do. I didnt want to bother anyone.

Saving Babies Lives Report 26

Parents need to be part of the drive to improvecare and safety. Parents are the best source ofinformation when it comes to knowing what isgoing on in their pregnancy. Parents cancontribute their intimate knowledge of their ownbaby, 24 hour surveillance of their pregnancy anda parents passion and commitment to ensuretheir babys welfare.

Parents and health professionals workingcollaboratively can reduce potential risk, identifyrisks where possible and act effectively to avoidharm where possible.

In the 21st century we have come to viewpregnancy and childbirth as events where theoutcome is expected to be good. Health servicesare focused on the quality of the birth experienceand giving parents as much choice as possible.

While parental choice is undoubtedly a goodthing, what every parent wants above all else is alive, healthy baby.

We believe parents have the right to know:

that sometimes babies do die in pregnancy

if they personally are at an increased risk ofstillbirth

that there are certain things they can do tominimise those risks.

that the quality of their antenatal carecould make a difference to the outcome oftheir pregnancy

what standards of care they should expect

that their care is personalised and that riskmanagement is incorporated into their careplan

that the care they are receiving is of thehighest standard

the service is funded at a level that allowshigh standards to be maintained

Sands parents have already shown that in theterrible circumstances of a babys death they canmake a real contribution to understanding whatwent wrong and what can be done to improvesafety in the future. Severall have workedtirelessly with their PCTs to change practice, eventhough such action will not bring back their ownbabies. Its time to give all parents a voice.

If, after Elliot had died, I had walked away,nothing would have changed. I dont wantto be seen just as a bereaved parent. I wantto be seen as an advocate for change.

Chris Wildsmith, Elliots Dad, who has worked closely with his PCT in Milton

Keynes to improve services

Sunday, another 17 babies

EVAN THOMAS WHITTAKERCHLOE MEDLEY

DANIEL STEWARTMARIA WOOLLEY

SOPHIE GALEDANNY HARRINGTON

HIMAT SINGH LALILEWIS DENT

BERTIE WHALEHARRY PEART

PHOEBE MCGUIRKELLA HURST

EVELYN MAUD PORTERCIANN BOON

OLIVER JOHNSONKELLY LENNOX-GORDON

EWAN STOCKTON

Saving Babies Lives Report27

References

1. Sands Surveys: in December 2008 and January 2009 Sands commissioned two surveys. The results of these surveysare used in this report.

national consumer survey of 985 men and women, to find out about their awareness of the risks of stillbirthand neonatal deaths.

survey of 270 parents, asking about the impact of their babys death and about their experience of antenataland neonatal care.

2. Perinatal Mortality 2008, England, Wales and Northern Ireland. Confidential Enquiry into Maternal and Child Health(2008).

3. Should older women have antepartum testing to prevent unexplained stillbirth? Fretts RC, Elkin EB, Myers ER,Heffner L, Journal of Obstetrics and Gynecology. (July 2004); 104(1):56-64.

4. The Pregnancy Book. The Department of Health (2007).

5. Antenatal care: routine care for the healthy pregnant woman. National Institute for Clinical Excellence, (March2008).

6. Fifth annual report. Confidential Enquiry into Stillbirths and Deaths in Infancy (1998).

7. Eighth annual report. Confidential Enquiry into Stillbirths and Deaths in Infancy (2001).

8. Stillbirth. Smith GC, Fretts RC. Lancet 2007 (November 17); 370(9600):1715-25.

9. Detection of fetal growth restriction. Perinatal Institute (2009), www.perinatal.nhs.uk.

10. Management of decreased fetal movements. Fren JF, et al. Seminars in Perinatology, Volume 32, Issue 4, August2008, Pages 307-311.

11. Methods of fetal movement counting and the detection of fetal compromise. Heazell AE, Fren JF, Journal ofObstetrics and Gynaecology. (February 2008); 28(2):147-54.

12. Safer Childbirth: Minimum standards for service provision and care in labour. Royal Colleges of Obstetricians andGynaecologists, Midwives, Anaesthetists and Paediatrics and Child Health (2007). London: RCOG Press.

13. Recorded delivery: a national survey of women's experience of maternity care 2006 (National PerinatalEpidemiology Unit, March 2007).

14. Safe births: everybodys business. An independent inquiry into the safety of maternity services in England. King'sFund (February 2008).

15. Intrapartum-related deaths: 500 Missed Opportunities. Chapter 6 of On the state of public health: annual reportof the Chief Medical Officer 2006, (2007).

16. Brenda Ashcroft, AvMA Medical and Legal Journal (November 2008) published by The Royal Society of MedicinePress.

17. Fourth annual report. Confidential Enquiry into Stillbirths and Deaths in Infancy (1997).

18. Summary of the intervention at Milton Keynes Hospital NHS Foundation Trust. Health Care Commission (2008).

19. British Association of Perinatal Medicine (2001) Standards for hospitals providing neonatal intensive and highdependency care 2nd edition, London: BAPM.

20. Bliss Baby Steps to Better Care Report 2008: includes a survey of the UKs neonatal units and 500 parents.

21. Bliss, the Neonatal Nurses Association, the British Association of Perinatal Medicine, The Royal College of Paediatricsand Child Health and the Scottish Neonatal Nursing Group.

22. National Perinatal Epidemiology Unit (2006). Networks admissions and transfers; the perspective of parents.

23. A Right to Care: a position statement on neonatal nurse staffing. Royal College of Nursing, (September 2008).

24. Common Trends in Stillbirths and Neonatal Deaths. Foot Anstey solicitors (2008).

25. Funding gap puts maternity reform at risk. Denis Campbell , The Guardian, 22 December 2008.

26. NHS Litigation Authority, www.nhsla.com.

27. BBC, www.bbc.co.uk, 6 February 2009, NHS facing 700m negligence bill.

Saving Babies Lives Report 28

Baby sculpture created by John Roberts for theSands Garden located at National MemorialArboretum, Alrewas, Lichfield, Staffordshire

Saving Babies Lives Report29

Definitions and statistics

Stillbirths

A stillborn baby is a baby delivered with no signsof life after 24 completed weeks of pregnancy.

In the UK in 2006 3,987 babies were stillborn. Thestillbirth rate was 5.3/1000 live and still births.

Improvements in maternity care led to a steadydecline in the stillbirth rate from the 1950s to themid 1990s. In 1994 the stillbirth definition waschanged from 28 weeks to the current 24 weeksgestation limit, with an accompanying change inthe stillbirth rate.

In 1997 the stillbirth rate was 5.3 and in 2000 it was5.4 . In 2002 the stillbirth rate went up to 5.7, stayingat that level until 2006 when it returned to 5.3.

Neonatal deathsA neonatal death is the death of a live babyoccurring before 28 days from time of birth. Earlyneonatal deaths are deaths in the first seven daysof life.

In the UK in 2006 there were 2,607 neonataldeaths. The majority of these deaths occurred inthe early neonatal period - 1,956. The neonataldeath rate was 3.5/1,000 live births.

Like the stillbirth rate, the neonatal mortality ratefell in the second half of the last century. In theearly part of this decade the neonatal mortalityrate continued to decline from 3.9 to 3.4, butsince 2005 has remained unchanged, at 3.5.

Perinatal deathsPerinatal mortality includes stillbirths and earlyneonatal deaths, that is deaths in the first sevendays after birth.

CausesStillbirthStillbirths are classified by cause of death in thedeath notification forms collected by ConfidentialEnquires into Maternal and Child Health (CEMACH)for England, Wales and Northern Ireland. Causes ofdeath have been classified using the Wigglesworthclassification system. From 2007 CEMACH hasadapted this classification system to address itswidely recognised limitations, particularly ingathering information about conditions associatedwith a death.

Unexplained antepartum fetal death 50%Congenital malformation 15.8% Antepartum haemorrhage 8.8%Death from intrapartum causes 7.6%Maternal disorder 5.6%Pre-eclampsia 2.8%Infection 2.7%Unclassifiable 0.6%Accident or non intrapartum causes 0.1%Other specific causes 5.9%

Of the unexplained antepartum deaths, two-thirds of the babies were born weighing less than2,500g.

Neonatal deathNeonatal death notifications are also collected byCEMACH. Deaths are classified according to theAberdeen Obstetric classification system. Causesof neonatal deaths for 2006 are given as:

Congenital malformation 23.3% Immaturity 47.1%Infection 10.1%Other specific causes 8.0%Death from intrapartum causes 7.7%Sudden infant death 2.4%Accident or non-intrapartum causes 0.3%Unclassifiable 1.1%

Sources: Mortality Statistics: Childhood, Infant and Perinatal Series DH3. No.39. Office for National Statistics (2008).General Register Office for Scotland, Annual Report 2006.Northern Ireland Statistics and Research Agency. Registrar General Annual Report 2006.CEMACH(2).

Saving Babies Lives Report

What else Sands does

Improving care when a baby diesSands has worked tirelessly with healthprofessionals to transform the care bereavedfamilies receive in hospital. Seminal publicationssuch as The Loss of your Baby, (1979) and SandsGuidelines for Professionals (1991, 1995, 2007),have resulted in midwives across the UK beingproperly trained in how to care for bereavedparents. Our guidelines are respected and usedinternationally.

Sands lobbied to change the definition ofstillbirth to a baby born after 24 weekscompleted gestation (previously it had been 28weeks) now incorporated in the Stillbirth(Definition) Act 1992.

Support for allSands offers support to anyone whose baby hasdied, whether their baby was stillborn or diedduring or after birth. A baby might have spentsome time in a special care baby unit, or mayhave died at an early gestation, or parents mayhave had to make the difficult decision to endtheir pregnancy. Some parents contact us yearsor decades after their babys death.

As well as supporting mothers and fathers, wehelp other family members, especiallygrandparents and other children. Many peoplecan be touched by a babys death, includingfriends and health professionals. Our support isopen to everyone who wants it.

At times you feel that you could drown inyour grief, and that nobody understandsthe hurt inside, but reading other peoplesexperiences shows that you are not aloneand lets you know that your thoughts andfeelings are perfectly normal.

Helpline : 020 7436 5881 Our experienced helpline team receive over 4,000calls a year.

UK-wide supportOur 100 local support groups are run by and forbereaved parents.

Online support Our support forum has over 1,800 regular users.www.sandsforum.org Sands website has information and support.www.uk-sands.org

Support publicationsLeaflets and books for a range of experiences.

My need to speak to someone who hadbeen there was overpowering. I foundmyself on the phone to a woman whosebaby, like mine, had died. Tell me aboutyour baby, she said and I found myselfpouring my heart out to a perfect strangerwith whom I felt an instant connection.

Fundraising for researchSands growing fundraising arm is at the forefrontof raising money to fund the research that isdesperately needed to understand why babiesdie and what can be done to save lives.

Our fundraising also means we can expand ourrole in training and informing better practice inbereavement care, and continue to offer highquality support around the UK.

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Today, another 17 babies will die.How much longer must this go on?

www.uk-sands.org www.why17.org