Talking about pregnancy loss

In a short film broadcast on BBC South TV*, Kate talks about her experience of recurrent loss, along with members of the Winchester miscarriage support group.

Recurring Miscarriage – Kate’s Story from Russell Sheath on Vimeo.

The film, made by Russell Sheath and Still River Films, confirms recent research evidence that pregnancy loss can have a huge impact on those going through it.  A significant number of women who took part in that research reported anxiety, depression and symptoms of post traumatic stress disorder, like flashbacks and panic attacks, even some months after their loss.

‘Kate’s story’ highlights the continuing sadness and distress of recurrent loss as well as new support techniques being trialled at Southampton University.  What comes over clearly too are the benefits of finding support from others who have been through something similar, whether through a local support group or by using the M.A. forum or social media.

Our helpline is also here for anyone who’d just like to talk things through, whether by phone or by email: info@miscarriageassociation.org.uk.

You really don’t have to go through this alone

*  You can watch the broadcast here – six and a half minutes into the programme.

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New research: “Miscarriage and ectopic pregnancy may trigger post-traumatic stress disorder”

New research published in the BMJ today highlights the levels of anxiety, depression and trauma felt by significant numbers of women after experiencing miscarriage or ectopic pregnancy.

We reproduce the press release below:

Miscarriage and ectopic pregnancy may trigger post-traumatic stress disorder

Women may be at risk of post-traumatic stress disorder following a miscarriage or ectopic pregnancy, suggests a new study.

The team behind the research, from Imperial College London, say the findings suggest women should be routinely screened for the condition, and receive specific psychological support following pregnancy loss.

In the study, published in the journal BMJ Open, the team surveyed 113 women who had recently experienced a miscarriage or ectopic pregnancy.

The majority of the women in the study had suffered a miscarriage in the first three months of pregnancy, while around 20 per cent had suffered an ectopic pregnancy, where the baby starts to grow outside of the womb.

The results revealed four in ten women reported symptoms of post-traumatic stress disorder (PTSD) three months after the pregnancy loss.

Miscarriage affects one in four pregnancies in the UK, and is defined as the loss of a baby before 24 weeks – although most miscarriages occur before 12 weeks. Ectopic pregnancies are much rarer, affecting around one in 90 pregnancies. The fertilised egg usually implants in the fallopian tubes connected to the womb, where it cannot grow, and so the pregnancy either miscarries or must be ended surgically or with medicine.

In the new study, funded by the Imperial College Healthcare Charity, the scientists sent the women questionnaires asking them about their thoughts and feelings after their pregnancy loss. All of the women had attended the Early Pregnancy Assessment Unit at Queen Charlotte’s and Chelsea hospital, West London.

The results revealed that three months after the pregnancy loss, nearly four in ten women (38 per cent) met criteria for probable PTSD.

Among the women who suffered a miscarriage, 45 per cent reported PTSD symptoms at this time, compared to 18 per cent of the women who suffered an ectopic pregnancy.

Post-traumatic stress disorder is caused by stressful, frightening or distressing events, and causes people to relive the event though nightmares, flashbacks, or intrusive thoughts or images that appear at unwanted moments. The symptoms can start weeks, months or even years after a traumatic event and can cause sleeping problems, anger, and depression.

The women in the study who met the criteria for PTSD reported regularly re-experiencing the feelings associated with the pregnancy loss, and suffering intrusive or unwanted thoughts about their miscarriage. Some women also reported having nightmares or flashbacks, while others avoided anything that may remind them of their loss, or friends and family who are pregnant.

Furthermore, nearly a third said their symptoms had impacted on their work life, and around 40 per cent reported their relationships with friends and family had been affected.

Dr Jessica Farren, lead author of the research from the Department of Surgery and Cancer at Imperial, said this research suggests women should have an opportunity to discuss their emotions with a medical professional.

“We were surprised at the high number of women who experienced symptoms of PTSD after early pregnancy loss. At the moment there is no routine follow-up appointment for women who have suffered a miscarriage or ectopic pregnancy. We have checks in place for postnatal depression, but we don’t have anything in place for the trauma and depression following pregnancy loss.

“Yet the symptoms that may be triggered can have a profound effect on all aspects of a woman’s everyday life, from her work to her relationships with friends and family.”

Dr Farren, who is based at Tommy’s National Centre for Miscarriage Research at Imperial, explained that previous research has suggested women who experience a stillbirth may develop post-traumatic stress disorder. However this is the first research to only focus on early pregnancy loss.

“There is an assumption in our society that you don’t tell anyone you are pregnant until after 12 weeks. But this also means that if couples experience a miscarriage in this time, they don’t tell people. This may result in the profound psychological effects of early pregnancy loss being brushed under the carpet, and not openly discussed,” she said.

The team, who conducted their research in collaboration with the University of Leuven in Belgium, also questioned a control group of 50 women with ongoing pregnancies.

The study results also revealed around one in five women had symptoms of moderate anxiety at three months after their pregnancy loss. In the control group, one in ten reported symptoms of anxiety.

Furthermore, one in 20 women reported symptoms of depression three months after their loss.

Professor Tom Bourne, senior author of the study, said the team are now planning larger follow-up studies, to confirm the findings and help identify at-risk women.

“Not all women who suffer a miscarriage or an ectopic pregnancy will go on to develop PTSD or anxiety and depression. Therefore we are now investigating why some women may be more at risk than others, to help medical professionals identify who may need extra support.”

Jane Brewin, chief executive of the charity Tommy’s, who part-funded the research, said: “This study gives a voice to many women who have suffered miscarriage in silence and the often significant consequences that follow. The message is clear: in a civilised society it is not acceptable for women to suffer in this way.  Following this study there must now be added impetus to change miscarriage treatment and care; many women need more support following a miscarriage and the NHS needs to rethink how women are treated throughout the experience so they do not suffer from PTSD and other psychological impacts. Tommy’s Centre for Early Miscarriage Research was opened this year with the support of many families who want to bring about change and we’d encourage all families to join with us to find answers to miscarriage and help improve care for everyone.”

Professor Bourne added that in addition to improving diagnosis of psychological disorders following miscarriage, researchers need to assess what treatments may help.

“We know that talking therapies, such as cognitive behavioural therapy, have been successful at treating PTSD. However we need to investigate how this treatment should be tailored to women who have suffered an early pregnancy loss.”

Ian Lush, chief executive of Imperial College Healthcare Charity, who funded the study, added: “Clearly, losing a baby at any stage is devastating for parents. We recognised early on the potential this piece of research had, and equally, how important the findings would be to patients and clinical staff right across the NHS. The outcomes that are being shared will hopefully mean the effects of early pregnancy loss deservedly get the spotlight shone on them, and women and their partners, thanks to better understanding of those effects, get the extra support they need.”

Nicole Martin, 42, suffered three miscarriages between 2013 and 2014. Although she didn’t take part in the trial, she understands the enormous emotional toll of early pregnancy loss.

The PR associate director from London recalled:

We started trying for our second child after my daughter turned one. We became pregnant with twins, but the first baby died five weeks into the pregnancy, and the second at around 10 weeks.

We immediately started trying again and I feel pregnant a month or two later. I was crippled with anxiety and took pregnancy tests every day. However, we miscarried again at seven weeks.

I became consumed with what happened to us. I returned to work but was a shadow of my former self, and wracked with guilt that I was unable to give my daughter a sibling. I withdrew from social situations, and felt unable to laugh or smile. I also found it very hard to be around or even see people who had more than one child.

We were pregnant again within a couple of months, but were thrown into despair and disbelief when we miscarried a third time.

Two month later, a few weeks after my 40th birthday, we became pregnant again and our beautiful son Joseph was born in March last year. Although we are now extremely happy, I often say the miscarriages robbed me of my personality. I stopped engaging with life; even with my daughter; and was consumed by my almost compulsive desire to have another baby. I couldn’t find joy in anything; and hated the jealousy I felt towards other pregnant women. My relationship with my husband was put under strain but somehow we got through it and, in many ways, it brought us closer together, and I will forever be grateful for the unfailing support he – and many others – gave me during that time.

The research was funded by the Imperial College Healthcare Charity, Tommy’s, and the National Institute of Health Research Imperial Biomedical Research Centre.

Note
1. ” Post-traumatic stress, anxiety and depression following miscarriage or ectopic pregnancy: a prospective cohort study” by J. Farren at al is pubished in BMJ Open.

An embargoed copy of the paper is available for download here:  https://icseclzt.cc.ic.ac.uk/pickup.php?claimID=d8X4JSwn8TFtPwWV&claimPasscode=VvueBhTvx3kTfdGE&emailAddr=k.wighton%40imperial.ac.uk

 

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Reflections on Babyloss Awareness Week

Last week was special.  The days between 9 and 15 October marked Babyloss Awareness Week, an annual opportunity to join with others to mark the brief lives of babies lost in pregnancy, at or shortly after birth or in infancy.

And people did.  There were remembrance services and memorial walks, events at Westminster and a three hour debate in the House of Commons.  Pregnancy and baby loss featured on radio and television, in the printed press and online.

The culmination of the week was on Saturday 15 October, International Babyloss Day.  At 7 p.m. their local time, people across the globe lit candles in memory of their babies’ brief lives as part of a Wave of Light.

ma_waveoflight_candle

By Sunday evening, 16 October, the image above was shared over 17,000 times, reaching 2.1 million people.  And hundreds of people have shared photographs of their candles with us.  We are saving them all on our Days That Matter website and later this month we plan to turn them into a video which we’ll share with you here and on YouTube.

Sadly, pregnancy losses happen every single day of the year, not just in October.  The statistics tell us that it is a sadly common experience – and yet people can feel very isolated and alone when it happens to them.

Babyloss Awareness Week reminds us all that while each loss of each baby is unique and individual, the thoughts and feelings for a tiny life lost are shared by many people.  There are people who understand, people who can offer understanding and a listening ear.

You don’t have to go through this alone.

 

 

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International Babyloss Awareness Day 2016

Today, Saturday 15 October, marks International Babyloss Awareness Day, the culmination of a week of activities and events that offer a special opportunity to mark the brief lives of babies lost in pregnancy, at or shortly after birth or in infancy.

The Miscarriage Association began the week by launching a new animation, telling the story of one couple’s experience of a missed miscarriage and highlighting our #heretolisten message.

There have been more public discussions of pregnancy and baby loss than ever before, thanks to the hard work and dedication of all the charities involved – and especially to MPs Will Quince and Antionette Sandbach, co-chairs of  the All Party Parliamentary Group on Babyloss, who:

  • hosted a Twitter discussion on babyloss
  • encouraged MPs to wear babyloss pin badges during Prime Minister’s Questions
  • arranged a special reception for bereaved parents, civil servants and politicians across all parties
  • organised a moving remembrance service in Westminster and
  • led a very powerful backbench debate in the House of Commons on Thursday, with excerpts widely shown on television and across social media.

M.A. ambassador Julia Hartley-Brewer broadcast interviews with Director Ruth Bender Atik and with Sports Minister Tracey Crouch; and journalist Amy Swales published her own reflections on miscarriage and fertility here and here.

But of course, Babyloss Awareness Week is primarily about and for women and men affected by babyloss.  They – and you – have been wearing pinbadges and Twibbons, organising and attending events, talking on social media, opening up to family and friends sometimes for the first time and raising awareness about the impact of pregnancy loss.

Tonight sees the culmination of the week.  At 7 p.m. local time, people from across the globe will light a candle or candles in memory of babies lost in pregnancy, at or soon after birth or in infancy, creating a Wave of Light in memory of babies who have died too soon. If you are taking part and would like to add your candle photo to our 2016 gallery and video, either upload it to our Facebook page with a message saying ‘for the gallery’ or email it to awareness@miscarriageassociation.org.uk.

Thanks to everyone for your support.

wave-of-light

Posted in news and events |

#heretolisten

The Babyloss Awareness Week animation that we launched yesterday ends with the message:

“It was such a hard time and we’ll never forget our baby, but having people listen – really listen – has helped us through.”

Here at the Miscarriage Association, we’ve supported thousands of people who have been affected by pregnancy loss, and one thing we’ve heard again and again is that it can often help to talk.

However we also know that talking can be difficult. People who want to support their friends tell us that they’re worried they’ll say the wrong thing and that they sometimes say nothing in case they make things worse.

Last year, we asked our supporters to share the helpful things that others had said to them after a pregnancy loss. There were hundreds of different answers. Everyone’s experience of loss is different, of course. However, a common message that emerged is that sometimes it’s not so much what we say, as what we do: being there for a friend, really listening to what they have to say, can make all the difference in helping them through.

That’s why, this Babyloss Awareness Week, we’re asking you to use the #heretolisten hashtag as you share one of the graphics below with your friends and family, on Facebook, on Twitter, on Instagram and across social media, to say – if you want to talk about pregnancy loss, I’m here to listen. Click on the thumbnails below for full-size images.

here-to-listen-friends here-to-listen-phone here-to-listen-scan here-to-listen-window

Illustrations by Emma Plunkett of planXdesign.

Two other people who will be here to listen later today are the chairs of the All Party Parliamentary Group on Babyloss.

From 2 to 3 p.m. today, the two group chairs, Will Quince MP and Antoinette Sandbach MP, will be on Twitter, asking questions to inform a special House of Commons debate about  pregnancy and baby loss this Wednesday. The Miscarriage Association will be participating in this event via our twitter account (@MiscarriageA). If you would also like to get involved, please follow the hashtag #babylossdebate.

For more information about the events in Westminster this week, see our Babyloss Awareness Week events page.

Posted in news and events |

Miscarriage Association launches new animation for Babyloss Awareness Week

Today is the start of Babyloss Awareness Week 2016, a special annual event to remember the brief lives of babies lost during pregnancy,  during or shortly after birth, or in infancy. Over the next seven days, women and men affected by babyloss, across the UK and around the world, will be wearing pinbadges and Twibbons, lighting candles, attending events and raising awareness about the impact of pregnancy loss.

To mark this special event, the Miscarriage Association is proud to launch a new animation, which tells the story of one couple’s experience of a missed miscarriage. The animation has three key messages: that for many, miscarriage isn’t just a physical loss, but the loss of hopes and dreams for the future; that talking about the loss can help; and that the Miscarriage Association is here to listen if you need us.

The animation was illustrated by Emma Plunkett from planXdesign and voiced by Amy Swales, both of whom have personal experience of miscarriage. The video was developed by The Service, with animation by Dom Faraway.

We have uploaded the video to both YouTube and Facebook. Please feel free to share it with your family and friends, and help raise awareness about pregnancy loss, both during Babyloss Awareness Week and beyond.

For more information about other activities and events this week, see the Babyloss Awareness Week page on our website.

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Online shop

Our sincere apologies to those of you trying to order a Babyloss pin badge, Christmas cards or other M.A. merchandise online.  Unfortunately, we’ve had to suspend the online shop, so until we have a new one in its place, please contact us directly to make your purchase.

You can:

  • call us on 01924 200799, Monday to Friday, 9 a.m. to 4 p.m. and pay by debit or credit card
  • email us at info@miscarriageassociation.org.uk and we’ll provide details of goods and costs – but we advise against putting card details on an email
  • order by post at 17 Wentworth Terrace, Wakefield  WF1 3QW and pay either by cheque or by providing card details.

In all cases, we’ll fulfil your order just as fast as we can, although we will prioritise Babyloss pin badges.

Thank you for your support and understanding.

Posted in news and events |

Job vacancy at the M.A.

Could you be part of our helpline team, supporting people who have lost a baby in pregnancy?

The Miscarriage Association (M.A.) works to ensure that everyone affected by miscarriage, ectopic pregnancy or molar pregnancy receives the care, support and information that they need.

We are seeking an additional Helpline Support Worker to add to our small team in Wakefield, West Yorkshire. We are looking for someone who can provide a sensitive and informed response to calls, emails and online requests for support and information.

The successful applicant will have excellent verbal and written communication skills, be able to communicate clearly, accurately and sensitively to a range of people on the phone, in writing and online.  S/he will have excellent listening skills, warmth and empathy and be able to cope on a daily basis with people who are distressed.

 

Salary: £20,137 + depending on experience

Hours: 37.5 hours/week.

Location: Wakefield, West Yorkshire.

Applications, to be sent by e-mail, must reach us by 12 noon on Wednesday 5 October.  Short-listed applicants will be contacted in the week beginning 7 October and interviews will be held on Thursday 20 October. 

 

You’ll find all the job and application details at www.miscarriageassociation.org.uk/about-us/the-charity/job-vacancy-helpline-support-worker/

 

Posted in news and events |

Job vacancy at the M.A.

Could you be part of our helpline team, supporting people who have lost a baby in pregnancy?

The Miscarriage Association (M.A.) works to ensure that everyone affected by miscarriage, ectopic pregnancy or molar pregnancy receives the care, support and information that they need.

We are seeking an additional Helpline Support Worker to add to our small team in Wakefield, West Yorkshire. We are looking for someone who can provide a sensitive and informed response to calls, emails and online requests for support and information.

The successful applicant will have excellent verbal and written communication skills, be able to communicate clearly, accurately and sensitively to a range of people on the phone, in writing and online.  S/he will have excellent listening skills, warmth and empathy and be able to cope on a daily basis with people who are distressed.

Salary: £20,137 + depending on experience

Hours: 37.5 hours/week.

Location: Wakefield, West Yorkshire.

Applications, to be sent by e-mail, must reach us by 12 noon on Wednesday 5 October.  Short-listed applicants will be contacted in the week beginning 7 October and interviews will be held on Thursday 20 October. 

 

You’ll find all the job and application details at www.miscarriageassociation.org.uk/about-us/the-charity/job-vacancy-helpline-support-worker/

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Reducing the loneliness

Losing a baby in pregnancy can be a deeply distressing experience – but it shouldn’t have to be a lonely one.  We are here to offer support and a listening ear, whether that’s over the phone, in one of our support groups, by email or online.

Here’s how to reach us:

 

Call our helpline Monday to Friday, from 9 a.m. to 4 p.m., on 01924 200795

“I felt that I couldn’t really talk to anyone after the first few weeks and I called the helpline. I just talked and cried and the lovely lady on the phone listened without judging me or getting bored. It really helped. I wasn’t sure what I was going to say before the phone was answered but it just came out.” 

 

E-mail us at info@miscarriageassociation.org.uk. We aim to reply the same or the next working day.

“Thank you SO MUCH for answering my questions honestly and openly. I haven’t been able to vocalise these worries to my midwife so your reply is just what I needed. This pregnancy is fine so far but obviously that doesn’t stop me worrying. Thank you again, for your concern and your response.” 

 

Call one of our support volunteers – someone who has been through pregnancy loss herself/himself: our helpline staff can give you details of your nearest volunteer.

“You have given me that chance to have the conversation I really needed to have. I could not find anyone else to have it with.” 

 

Go along to one of our support groups.  You’ll find a list here.

“I came along to the group in February and I just wanted to say thank you very much for organising it. While I only came once it helped me a lot. I don’t know when I’ll be back again as I’m actually pregnant again. But I really appreciated the group existing and the option to talk to others very honestly who really understood.”

 

Join our online forum: a safe, secure and friendly place where you can share your thoughts, feelings and experiences with others who have been through something similar. 

“I have spent hours on this forum in the past 18 months. It has given me somewhere to share my heartache and helped me realise that I was not alone at a point in my life where I felt so alienated from everyone around me. The forum gave me the opportunity to connect with people who knew how I felt.” 

 

Join one of our Facebook groups  – busy and active groups where people from across the UK and well beyond it come together to talk about their experiences.

“I cannot tell you how lost I was until I found this group it truly was like running into a big pair of open comfy safe arms where everybody understood how I felt and confirmation that I wasn’t nuts or weird. I realized my reactions were all normal that alone helped.” 

 

Read others’ stories here and think about sharing your own.

 

You really don’t ever have to feel alone.

 

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