What miscarriage research would you like to see?

The Miscarriage Priority Setting Partnership is currently running an online survey to help shape the future of research into miscarriage.

They want to know what sort of things people think should be researched when it comes to miscarriage.  And the people they especially want to hear from are women and men who have experienced a loss, as well as their friends and family and health care professionals.

The online survey gives you the opportunity to state the questions about miscarriage that you think need answering.  Taken together, all the questions will help inform future research, which can in turn help improve care and treatment.

PSP_logo_FINAL_web

If you would like to add your views, please visit www.MiscarriagePSP.org to complete the survey, which will be open until Monday 4th January 2016.

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Coping with the festive season

It’s nearly Christmas, as well as the Hindu festival Pancha Ganapati. A time for celebrating, a time for family and friends and, very often, a time where children and babies are in the forefront of people’s minds.

Some of you will find this a very dark time and might struggle to get through the next few days. Some of you will be deeply thankful for the baby or babies you now have. Either way, many of you will be thinking about your lost babies, the children who might have been.

 

Christmas bauble

 

Please remember that we are here for you.

  • Even when we close for the holidays (Fri 25 and Mon 28 December; and Fri 1 January) we have a small group of volunteers who are happy to offer telephone support. (Call 01924 200799 to get their contact details.)
  • If you join our support forum by 3 p.m. on 24 Dec, or between 29 and 31 Dec, you can post and read messages throughout the breaks, thanks to our volunteer moderators.
  • You can use our Facebook page and groups at any time to share your thoughts and feelings with others.
  • You may want to create a message to your baby or babies on our Lights of Love tree at http://www.miscarriageassociation.org.uk/support/marking-your-loss/lights-of-love-tree/

You may also feel that this is a perfect time to support the Miscarriage Association, to help us to be there for others who have lost a baby in pregnancy.  Please consider making a donation and/or visit http://www.miscarriageassociation.org.uk/get-involved/ to see how you can help to make a difference.

Here’s hoping you have a gentle and peaceful holiday season and a happy 2016.

From all of us at the Miscarriage Association.

 

 

 

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Lights of Love: remembering babies who died in pregnancy

At this time of the year, as the days get shorter, our minds start to turn to the upcoming holiday season. It’s traditionally a time of celebration, but we know how hard it can be for those who’ve experienced a miscarriage, ectopic or molar pregnancy.

The M.A.’s Lights of Love tree is a memorial to babies loved and lost in pregnancy.  On our online tree, each star holds a message of remembrance to a baby or babies lost through miscarriage, ectopic pregnancy or molar pregnancy – creating a beautiful place to mark those brief lives.

We also have a small tree in our Wakefield office.  Covered in tiny white lights, the tree offers an alternative memorial spot – or you might like to use both.  You can read about both options here.

Whether or not you choose to use the trees, please do remember that we’re here to offer support via phone, email, our online forum, Facebook and local support volunteers.

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“Flu vaccination in pregnancy protects both mothers and babies.”

The Miscarriage Association is supporting the Royal College of Obstetricians & Gynaecologists (RCOG) and the Royal College of Midwives (RCM) in encouraging more pregnant women to come forward for the free flu vaccine this winter.

In a statement issued last month,  Dr Patrick O’Brien, spokesperson for the Royal College of Obstetricians and Gynaecologists (RCOG) said:

“Any viral infection, including seasonal flu, can cause harm to a mother and baby during pregnancy. It can also be serious for newborn babies if they catch the infection from their mothers.

“Some women may be concerned that getting vaccinated during pregnancy might harm their baby* but we want to reassure them that flu vaccination is safe, effective and can be given at any stage of pregnancy. Having the flu vaccine will also protect your baby during the first few months after birth.

“We strongly encourage pregnant women who haven’t had the vaccine yet, to contact their GP or midwife today.”

* We understand that many women and their partners will worry about the risk of the flu jab causing miscarriage. It may help to know that the evidence shows that the risks of flu to mother and baby are much higher than the risks of the vaccine. 

You can also read Public Health England’s guidance for doctors here.

 

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A clear result for PROMISE

Progesterone supplements in the first trimester of pregnancy do NOT improve outcomes in women with a history of unexplained recurrent miscarriages.

Five years after it began, the results of the PROMISE (progesterone in recurrent miscarriage) trial have now been published (1).

Clear but disappointing

These results are clear, they are very important – and they are bound to be disappointing to many women and couples – and to those who care for them. We had all hoped that the trial would show that progesterone is an effective treatment for those considering pregnancy after previous losses, but sadly we now know it is not.

The study of 826 women with previously unexplained recurrent miscarriage showed that those who received progesterone treatment in early pregnancy were no less likely to miscarry than those who received a placebo (or dummy treatment). This was true whatever their age, ethnicity, medical history and pregnancy history.

Positives too

There is important good news here too. The first is that nearly two-thirds of the women in the trial had their baby, whether they had progesterone or the placebo. So even without treatment, the chances of a healthy pregnancy after unexplained recurrent miscarriage are better than some might expect.

The trial results also showed that there were no harmful effects of progesterone treatment for women or for their babies. That is very important information for women taking progesterone for other reasons, such as fertility treatment or for those taking part in the PRISM (progesterone in threatened miscarriage) trial.

Finally, after more than 60 years of debate, we now know that progesterone treatment in early pregnancy isn’t the answer for women with unexplained recurrent losses. And that means that researchers can now direct their efforts to exploring and testing other treatments that really can reduce the risk.

Click here for more information, including:

(1) Coomarasamy A et al. A Randomized Trial of Progesterone in Women with Recurrent Miscarriages.  N Eng J Med 2015 Nov 26;373(22):2141-8. DOI: 10.1056/NEJMoa1504927.

 

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The thin blue line, the deep red sea

We are delighted to announce the publication of artist Marjolaine Ryley’s new book, ‘The Thin Blue Line, the Deep Red Sea’.

Slide35CoverThe culmination of 18 months work as the Miscarriage Association’s artist in residence, funded by the Arts Council, this publication explores the experience of miscarriage through photography and creative writing.

That sounds simpler than it is.  The photographs express aspects of Marjolaine’s experiences of pregnancy and loss, from the feathery seed-heads blown by a gust of wind, to the unused powdered milk spelling out the word ‘Bye’. Her words mix thoughts, memories and dreams – pregnancies, lost babies, living children.  It is powerful and beautiful.

GustofWindRyley (1 of 1)

Her book ends with the acknowledgements to funders, supporters and advisors – and, too, to those who offered another kind of support:

‘Special thanks to Kathryn, Theresa, Rosie, Megan and to all on the MA forum who held my virtual hand in the darkest of days.’

‘The Thin Blue Line, The Deep Red Sea’, published by NEPN, is available as a free e-book as well as a PDF.

There are 250 signed and limited edition copies of the book available for sale, with all proceeds going to the Miscarriage Association. These are available for £6.00 including p&p and can be ordered by emailing . marjolaine.ryley@sunderland.ac.uk.

You may also wish to visit Marjolaine’s website.

 

 

 

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An opportunity to give your views on bereavement care

Maternity Review: Invitation to families who’ve been bereaved or experienced complications in their maternity care.

Friday 6 November, Manchester

Friday 20 November, London

We have mentioned before that there is currently an independent review of NHS maternity services in England to make recommendations for improvements in maternity care provision.  Some of you may have been to the consultation meetings that have been held around the country.

Thanks to the work of our sister charities SANDS and BLISS, the review team have now added two additional opportunities to focus on care after bereavement or complications in maternity care.  While the focus is generally on care after 12 weeks of pregnancy, this may be of interest to you, so we have posted the details here.

 

The NHS Maternity Review, in conjunction with the charities Sands and Bliss, would like to invite parents to come and share their views on maternity services if they have experienced the following:

  • the death of their baby before, during or soon after birth or
  • complications affecting the health of mother or baby (including neonatal admission after birth)

During these meetings we would like to talk to you about your views on maternity services. We will focus on learning from your experiences and listening to your suggestions on what can be done to improve maternity and neonatal services in the future.  Your views will be treated as confidential and all views will be respected.

The events will take place on Friday 6th November in central Manchester and in London on the 20th November.

At each event two sessions will be held for different groups of people:

Friday 6th November, Manchester

Session 1 – for parents of babies who died before, during or soon after birth

9.30 – 13.15 (Arrival from 09.00), facilitated by Sands

Session 2 – for parents who experienced complications in pregnancy, labour or birth affecting the health of mother or baby, including admission to neonatal care.

14.00 – 16.30 (Arrival from 13.30), facilitated by Bliss

Friday 20th November, London

Session 1 – for parents who experienced complications in pregnancy, labour or birth affecting the health of mother or baby, including admission to neonatal care

10.00 – 12.30 (Arrival from 09.30), facilitated by Bliss

Session 2 – for parents of babies who died before, during or soon after birth

13.00 – 16.15 (Arrival from 12.30), facilitated by Sands

 

To book your place, please email info@uk-sands.org, specifying which session you would like to attend and whether you would like to attend in Manchester or London.

For general enquiries about the Review please contact england.maternityreview@nhs.net

Please note that while your experience may relate to both sessions, you are requested to just choose one session in order to allow the maximum number of people to participate.

Travel costs can be reimbursed, and further information will be provided at the booking stage.

We recognise that it may be hard to take part in such discussions and therefore Sands and Bliss staff will be present to offer support should you need it.

 

For more information on the purpose and scope of the review, please visit https://www.england.nhs.uk/ourwork/futurenhs/mat-review/

If you are unable to attend these events, very shortly you will also be able to take part in the review by completing an online survey specifically aimed at this group of parents, developed in collaboration with Sands and Bliss. An announcement will be made as soon as the survey goes live.

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An individual experience

While many people who experience pregnancy loss have feelings in common, it’s also clear that each situation is unique.  It can depend on

  • this particular woman or her partner;
  • the meaning this pregnancy had for them;
  • the loss itself; and
  • the future following that loss.

We share here four experiences, each focusing and reflecting on a different set of circumstances.

Gail discusses the particular perspective of pregnancy loss in her forties.

Jessica, still hoping to have a baby after experiencing ectopic pregnancy, observes a mother with a crying baby.

Elizabeth talks of experiencing the loss of her third child five months into her pregnancy.

Jasmin tells Asian weekly “Eastern Eye” about her experience of miscarriage and molar pregnancy.
(Our thanks to Eastern Eye for permission to link to this feature)

 

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A special day

Wave of LightEvery year, 15 October  marks International Pregnancy and Infant Loss Remembrance Day, generally known in the UK as Babyloss Awareness Day.

Wherever you are, it offers an opportunity to join with others in marking the brief lives of babies who died in pregnancy, at or shortly after birth or in early infancy.

This year was no exception.  Some people were telling their stories, others sharing thoughts about what helped them through after their losses and some attended events or took part in some kind of activity to mark the day. Here we mention just three of these:

A ribbon

Some people wore a specially designed pin badge and/or added a virtual pin badge to their Facebook or Twitter profile or their email signature.  Many are continuing to wear their ribbons even after 15 October.

Wave of Light, 7 p.m.

A huge number of people took part in the Wave of Light, lighting a candle or candles at 7 p.m. in their local time zone. We are creating a video of candle images which we will highlight next week, but you see  our gallery of candles from 2014 here.

If you’d still like to share a photo of your candle/s, feel free to upload it to our Facebook page. If you would like your photo to be part of a video slideshow that we will create after Babyloss Awareness Day, please just add a note ‘For the video’ when you upload it.

First Heartbeat

A documentary about recurrent miscarriage, this film follows the journey of Lisa and David as they seek answers and hope after loss. Broadcast on the TLC* channel on 15 October, it will be repeated on Sat 17 and Mon 19 October at 9 p.m..

* SKY 125, VIRGIN 167, BT 323, TalkTalk 413

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Babyloss Awareness Week, 9-15 October

Pin badge

During Babyloss Awareness Week we are sharing stories, events and activities that mark the brief lives of babies lost in pregnancy, or during or shortly after birth.

The Miscarriage Association and our supporters are helping to break the taboo around pregnancy loss by:

Telling their stories/sharing their thoughts

  • Natalie shares her story here
  • LHands on keyboarducy remembers ‘Thailand baby’, the baby they never got to meet, here
  • Wendy reflects on pregnancy tests and losses, and shares a powerful poem here
  • In Babyloss Week, a year after her loss, Lilla reminds us here that fathers can suffer just as much as mothers and that it is important to care for them and the relationship too
  • Jade has collected thoughts, feelings and images from others who want to raise awareness about pregnancy loss in a YouTube video
  • Liverpool’s Bay TV hosts a thoughtful discussion on miscarriage, childlessness and faith, here
  • And at 10 p.m. on Thursday 15 October, the TLC channel will feature ‘First Heartbeat’, a documentary following Lisa and David’s story of recurrent miscarriage.

SayingThanks imageSaying thank you to those who supported us in what they said and did to help us through.  You can

Wearing a Babyloss Ribbon

 Attending an event

  • You’ll find information about events here and here.

CandleSharing the Wave of Light

  • Lighting a candle or candles at 7 p.m. local time on Thursday 15 October.  You can see our gallery of candles from 2014 here.

 

In addition to the Miscarriage Association, other charities marking Babyloss Awareness Week include SANDS, ARC, the Ectopic Pregnancy Trust, BLISS, the Lullaby Trust and TAMBA.

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