Support on Mothers’ Day

Mothers’ Day can be a tough time for those of you thinking about babies who died before they were born – especially if others don’t understand your feelings of loss at this time.

One place where people really do understand is in our private Facebook group.  And while the discussion thread below isn’t about Mothers’ Day specifically, it does show the kindness, comfort and support that its members bring to each other.

My thanks to the group members who have allowed us to post this discussion. We have, as promised, kept their posts anonymous to protect confidentiality.

*****

A:  This is a very heartfelt thank you post to each and every one of you lovely ladies.
I’ve never posted in this group, I sometimes feel I shouldn’t. My miscarriage was years ago and not recent and I know most of you ladies are going through hard times more recently.
I suffered my loss in silence and it had a huge impact. It affected the intimacy with my husband and I and so we have failed to get pregnant. Not so long ago my mum told me I should get some help and I chose this page over talking to someone.

I see all your post and my heart breaks for you, and then I read all the support you give each other and read your kind words. Without even knowing it you ladies have helped me. I’ve seen that what happened to me has happened to other(I wish it hadn’t) I’ve been touched by all your love and support to each other and have started after 6 long years to feel I can move forward. I’d really like to advise any lady not to suffer in silence as the impact can be devastating. But for all you wonderful ladies out there supporting each other, you are all amazing. You’ve all hurt and you still are making time for others, you help others without even knowing and for this I thank you so much

 

B:  You’ve just brought tears to my eyes, what a lovely post. So sorry for your loss, no matter how long ago it was the hole remains. I have seen posts on here from people who didn’t deal with it from decades ago, so good for you to deal with it now. Let us know if there’s anything specific you want to work through with us.

 

A:  That’s very kind, B, thank you x

 

C:  I feel the same way about this group. It’s like my family! Whenever I feel sad or am out and have one of those moments that only women who have had MCs can understand, I think of this group and I feel united together even though I’ve never met anyone! It’s lovely and I’m hoping to do some sort of fundraiser for the miscarriage association at some point to express my gratitude for this group! Xxx

 

D:  Yes since my loss in December I have found this group a great support, we all understand and support each other, it’s such a relief that I have found the group, family and friends have been great and are very well meaning but all of the ladies on here just have such understanding you feel that you are not alone x

 

E:  Bless you A. My miscarriage happened 5 years ago and only a handful of people know. Even some family don’t. I didn’t want my heartache to be someone else’s gossip so I would cry alone into my pillow. I’ve got braver with it over the years, with hints of what has happened.

This group is amazing, I agree. I found even if someone recognises a post, it’s a solidarity comfort. It’s a sad fact that we all share a common heartache, although I think sometimes a gentle comment eases the loneliness. Time continues and love always remains xxx

 

F:  You have brought a tear to my eye too, what a lovely and honest post. I am so glad this group has helped you start to move on, I know it helped me massively too. I was able to ask questions that I simply couldn’t ask anyone else. Xx

 

You can ask to join the Facebook group here.

 

Posted in news and events |

Reflections on pregnancy loss

The experience of pregnancy loss – miscarriage, ectopic pregnancy, molar pregnancy – is always unique.  Even though there are often shared elements, everyone’s story is different, like so many experiences in life.

Today we are sharing four stories, with thanks to the parents who have allowed us to do so.

 

The first is an essay by Nuala Ni Conchuir, published in today’s Irish Times.   Nuala had her fourth miscarriage last year, at the age of 45.  She also has three living children. She writes of loss, love and hope – and of the views of others as to whether she should keep trying.

 

The second is a reflection from Jessica.  After a ruptured ectopic pregnancy and still childless, she shared her thoughts on seeing a crying baby.

 

In the third reflection, Lindsay shares her story of losing Lucas, sixteen weeks into her pregnancy.

 

And finally, Neil shares his feelings of grief and distress both at the time and some years later.

 

 

 

Posted in news and events |

A certificate of loss

When a baby dies before 24 weeks of pregnancy, there is no legal recognition of his or her brief life, no birth or death certificate.

While some parents may be relieved that they don’t have to face the ordeal of registering their loss at the local Registry office, others find this threshold immensely distressing and hurtful.

“He was my baby. I’d seen him on scan, I’d felt him kick.  How can someone say he doesn’t count?”

A recent online petition seeks to lower the age of registration to 20 weeks rather than 24.    That would be welcomed by many parents – although it would not help those whose  babies died at, say 18 or 19 weeks.

Others campaigns have argued that that there should be no threshold at all, allowing the registration of the loss of any baby who dies at any stage of pregnancy.

CertificateIt seems unlikely that the law on the age of viability will be changed in the foreseeable future, but we believe we have an opportunity now to campaign for the wider availability of certificates of loss for those parents who would like them.  These would not be the same as a legal document, it’s true, but they would go some way to marking these tiniest of lives.

The Miscarriage Association – along with other organisations too – has long encouraged hospitals to offer parents some form of certification for babies lost in pregnancy.  We would be delighted if you would share our guidance for hospitals with your local NHS Trust.

We talk about the emotional impact of late loss here.  Our leaflet on late miscarriage provides information about both the facts and the feelings of this deeply distressing experience.  And the Late Loss section of our forum is a very special place for sharing experiences and support.

 

 

Posted in news and events |

Late miscarriage

ITV’s ‘Coronation Street’ continues to feature a powerful story-line of late miscarriage – one that has had real impact on regular viewers and others too.

It is also one that mirrors real life for actors Kym Marsh and Simon Gregson, both of whom have experienced the loss of a baby late in pregnancy.  Kym Marsh talks here about why she chose to tackle this story-line and her hopes that it might raise awareness.

One the issues highlighted by the programme has been the fact that when a baby dies before 24 weeks of pregnancy ( in this case at 23 weeks) there is no legal recognition of his or her brief life, no birth or death certificate.

While some parents may be relieved that they don’t have to face the ordeal of registering their loss at the local Registry office, others find this threshold immensely distressing and hurtful.

“He was my baby. I’d seen him on scan, I’d felt him kick.  How can someone say he doesn’t count?”

Some bereaved parents have set up campaigns to petition for the law to be changed, either by lowering the 24 week threshold or by removing it altogether.  Sadly, this issue is linked to other legislation (such as the Duty of Care) and it seems very unlikely to succeed.

Others have backed our call – and that of other organisations too – for hospitals to offer parents some form of certification that recognises the significance of babies lost in pregnancy, whatever stage they occur.  You can find our guidance notes for hospitals here.

We talk about the emotional impact of late loss here.  Our leaflet on late miscarriage provides information about both the facts and the feelings of this deeply distressing experience.  And the Late Loss section of our forum is a very special place for sharing experiences and support.

Posted in news and events |

Late loss

Viewers of ITV’s ‘Coronation Street’ will be aware that this evening’s episode will continue Monday’s storyline of a threatened miscarriage, 23 weeks into the pregnancy.

Credit is due to the programme’s researchers, who worked very hard to get all the details right, consulting us at the M.A. as well as SANDS. The team has also ensured that their helpline provides contact details for both charities.

But greater credit goes to actor Kym Marsh for playing a role that so sadly mirrors her personal experience of second trimester loss.  It is a real testament to her that she wants to ensure that more people understand what it means to lose a baby in pregnancy, as noted here.

We talk about the emotional impact of late loss here.  Our leaflet on late miscarriage provides information about both the facts and the feelings of this deeply distressing experience.  And the Late Loss section of our forum is a very special place for sharing experiences and support.

 

Posted in news and events |

Our sympathies

We send our sympathies to Zara and Mike Tindall on the announcement of the loss of their baby.

Miscarriage is sadly common – around one in four pregnancies ends before 24 weeks of pregnancy, most before 14 weeks.  Miscarrying after that time – especially when all looks well at the 12 week scan – is much less common and can come as a great shock.  It is hard, too, when the pregnancy has been only recently been confirmed to family and friends – and in this case the public too.

Whenever a miscarriage happens, though, most parents experience it as the loss of a baby and all the hopes, plans and dreams for that child.  Feelings of loss and grief are common and it can be very important to have the support and understanding of those around you to help you through.

We hope that Zara and Mike Tindall find that support and wish them gentler times ahead.

The Miscarriage Association recognises the distress of losing a baby in pregnancy and we offer support and information to anyone affected by it.

See also:

Your feelings after miscarriage

Late loss

Partners Too

Posted in news and events |

Coping with the festive season

It’s nearly Christmas, as well as the Jewish festival of Chanukah.  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 (Mon 26 and Tues 27 December; and Mon 2 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 23 Dec, or between 28 and 30 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/

lights-of-love-tree-2016

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 2017.

From all of us at the Miscarriage Association.

 

 

 

Posted in news and events |

Bereavement care after pregnancy and baby loss

A chance to share your views on bereavement care after pregnancy and baby loss:  meetings in London (19 Jan) & Manchester (10 Feb).

 

The M.A. is working with a number of partner organisations to create a national Bereavement Care Pathway.  The aim is to ensure that all parents who lose a baby in pregnancy, at birth or in infancy are offered the same high standard of bereavement care and support, wherever they live.

If you would like to share your views on current and future bereavement care after miscarriage, ectopic or molar pregnancy, there’s an opportunity to attend one of two parent stakeholder events being held in London and Manchester on the afternoons of Thursday 19 January and Friday 10 February respectively.  Places are very limited, I’m afraid, so if you’re interested, please do click on one of the links below as soon as you’re sure you’ll be able to attend.  Do make sure that you click the link for the miscarriage, ectopic and molar pregnancy workshop.

To register for the London meeting and for further info, please click here: https://www.eventbrite.com/e/national-bereavement-care-pathway-parent-stakeholder-event-london-tickets-29781527350

To register for the Manchester meeting and for further info, please click here: https://www.eventbrite.com/e/national-bereavement-care-pathway-parent-stakeholder-meeting-manchester-tickets-29785725908

More information on the project can be found here:

http://www.uk-sands.org/professionals/national-bereavement-care-pathway

 

 

Posted in news and events |

Saving Lives, Improving Mothers’ Care

This month sees publication of the latest report [1] from the UK and Ireland Confidential Enquiry into Maternal Deaths and Morbidity.

“Saving Lives, Improving Mothers’ Care” is the work of MBRRACE-UK: Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK.  The document reports on investigations into all maternal deaths during and after pregnancy between 2009 and 2014 and highlights the lessons to be learned. The message throughout is that improving training, communication and multi-disciplinary care – along with raising public awareness of danger signs – can save lives.

Deaths in early pregnancy

This year’s report focuses primarily on deaths from maternal heart disease and pre-eclampsia, as well as deaths relating to mental health problems, but there is also important information on deaths in early pregnancy, especially from ectopic pregnancy.

Ectopic pregnancy: information for health professionals, women and their partners/family/friends

Of the 191 women who died between 2009 and 2014 at less than 24 weeks of pregnancy, nine died as a direct result of ectopic pregnancy.  The report’s lay summary[2] notes the signs and symptoms of ectopic pregnancy and highlights the need to go to an early pregnancy clinic or Accident & Emergency department for assessment as soon as possible.

The full report provides more detail for hospital and community health professionals.  It highlights the need to suspect ectopic pregnancy in women of reproductive age who are either collapsed or have other symptoms of illness, and to remember that some women may not know they are pregnant. Correct diagnosis and treatment is critical:

“A diagnosis of ectopic pregnancy should be considered in any woman of reproductive age presenting to the emergency department with collapse, acute abdominal/pelvic pain or gastro-intestinal symptoms, including diarrhoea, vomiting and dizziness, regardless of whether she is known to be pregnant.  A bedside pregnancy test should be performed in these women.”

Molar pregnancy

About one in 600 pregnancies is a molar pregnancy. That means it is quite rare, especially compared with miscarriage, which affects around one in four pregnancies.

There was one death reported in a woman with molar pregnancy, but this was primarily caused by a condition called HELLP (a variant or complication of pre-eclampsia).  Deaths from molar pregnancy are extremely rare, but it is important that they are diagnosed and followed up at specialist centres.

For this reason, the lay summary suggests that women who still feel pregnant several weeks after a miscarriage do a pregnancy test, since “there is a very small chance of some abnormal placental tissue remaining”.

We feel that this note could have been clearer.  While it can take time for pregnancy symptoms to disappear after miscarriage, if they continue for more than two or three weeks and if a pregnancy test is still positive, that might be a sign of a molar pregnancy.  A follow-up scan and/or further pregnancy tests can help assess if further treatment, including surgical removal of any remaining pregnancy tissue, is needed.

We have more information about molar pregnancy here.

Recurrent miscarriage

Recurrent miscarriage is not in itself a possible cause of maternal death.  However, if it is caused by antiphospholipid antibody syndrome (also called APS or sticky blood or Hughes syndrome), it increases the risk of pre-eclampsia.

The important messages here are that if you have been diagnosed with APS, it is worth reminding health professionals of this throughout your pregnancy so that you receive additional care and assessment.  If you have had two or more consecutive miscarriages but have not been tested for APS, you may want to discuss this with your GP.

We have more information about APS and pregnancy here.  And there is more general information about recurrent miscarriage here.

Mental health problems

The report highlights that mental health problems remain a leading cause of death in pregnancy and in the 12 months after pregnancy and we welcome the authors’ advice to “speak out and get treated early”.

We know that feelings of grief, loss, anxiety and depression are common after pregnancy loss, but that doesn’t make them easy to deal with.  The Miscarriage Association can offer support, understanding and a listening ear, but that might not be enough.

If you are worried about your thoughts and feelings, especially if you feel that you are getting worse rather than better or if you have suicidal thoughts, please do seek help from your GP or specialist mental health service.

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[1]Saving Lives, Improving Mothers’ Care

Knight M, Nair M, Tuffnell D, Kenyon S, Shakespeare J, Brocklehurst P, Kurinczuk JJ (Eds.) on behalf of MBRRACE-UK. Saving Lives, Improving Mothers’ Care – Surveillance of maternal deaths in the UK 2012-14 and lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2009-14. Oxford: National Perinatal Epidemiology Unit, University of Oxford 2016.

[2] MBRRACE-UK – Saving Lives, Improving Mothers’ Care 2016 – Lay Summary

 

7 December 2016

 

 

Posted in news and events |

“No need to wait to conceive after miscarriage”

Research published this week [1] has highlighted that couples wanting to conceive after a miscarriage don’t have to worry about the risks of trying again too soon.[2]

The authors conclude that conceiving within the first six months after miscarriage does not increase the risk of miscarriage or of other adverse outcomes [3] in the new pregnancy.

On the contrary, it showed that pregnancies conceived in the first six months after a miscarriage were actually less likely to result in another loss than pregnancies conceived more than six months later.  Conceiving in those first six months was also associated with a lower risk of a pre-term birth.

Dr Sohinee Bhattacharya, from the University of Aberdeen, who led the research, acknowledges that it is not clear why conceiving within six months leads to better outcomes.  Nevertheless, this comprehensive review of all the published studies about the effects of timing of conception after miscarriage has confirmed research she first published in 2010.

The new study concludes: “There is now ample evidence to conclude that delaying a pregnancy following a miscarriage is not beneficial and unless there are specific reasons for delay, couples should be advised to try for another pregnancy as soon as they feel ready”.

So what does this mean for you? 

We think there are several key messages here.

  • It’s important news. Above all, it confirms that that couples can choose to try again whenever they feel ready to do so.
  • It’s encouraging news if you want to try to conceive soon after miscarriage and you feel emotionally and physically ready. Once any bleeding has stopped there’s almost certainly no need to wait (unless your doctor has advised otherwise).
  • It’s reassuring news if you worry that you might have miscarried because you conceived too soon after a previous loss. That’s highly unlikely.
  • It’s confusing news if you don’t feel ready to try again – as you might worry that you’re increasing your risk of having another miscarriage. But waiting until you feel ready is likely to be best for both your mental and physical health and the researchers themselves emphasise that “… couples should be advised to try for another pregnancy as soon as they feel ready”.  (Our emphasis)
  • It’s possibly upsetting news if it takes you longer than 6 months to conceive, or if you simply don’t have the option of trying again that soon, for whatever reason.

Perhaps it will help to remember that this is a statistical analysis and it talks about averages and trends – not necessarily about you and your circumstances.  It tells us that overall, there is no benefit in waiting and that conceiving earlier can reduce the chance of another loss, though we don’t know why.

We do know that miscarriages happen for many reasons that have nothing to do with pregnancy interval and that most of these reasons are beyond your control.  All you can do is do the best you can with your own situation [4], and try again whenever you are ready and able to do so.

 

Notes

[1] Kangatharan C, Labram S & Bhattacharya S  Interpregnancy interval following miscarriage and adverse pregnancy outcomes: systematic review and meta-analysis.  Human Reproduction Update (2016) doi: 10.1093/humupd/dmw043

[2] Press release at http://www.abdn.ac.uk/news/10205/ (or see below)

[3] Other adverse outcomes: pre-term birth, pre-eclampsia, low birth weight babies and stillbirths.

[4] See http://www.miscarriageassociation.org.uk/wp/wp-content/leaflets/Thinking-about-another-pregnancy.pdf. (We’ll need to update it!)

 

PRESS RELEASE

Issued on 30 November 2016 by the Communications Team, Directorate of External Relations, University of Aberdeen.

No need to wait to conceive after miscarriage

Women who get pregnant soon after a miscarriage are more likely to have a successful pregnancy than those who wait to conceive again.

Contrary to World Health Organisation (WHO) guidelines that recommend waiting at least 6 months, the comprehensive review by the University of Aberdeen found that pregnancies were most successful if conceived within 6 months of a miscarriage.

The meta-analysis, published today in Human Reproduction Update, confirms an earlier study by Dr Sohinee Bhattacharya and colleagues that found that conceptions within 6 months of a miscarriage were less likely to result in another miscarriage or a subsequent preterm birth.

Pre-eclampsia (high blood pressure in pregnancy), low birth weight babies and stillbirths were no different in conceptions within 6 months and those after 6 months.

Dr Bhattacharya who led the meta-analysis said: “This review of all the published research to date shows categorically that conceiving within 6 months after a miscarriage is best.

“In 2010 we were the first to report that conceiving straight after miscarriage was more successful than waiting.  Subsequently, more papers came out finding the same thing, which is why we did a comprehensive review of all available research.

This review of all the published research to date shows categorically that conceiving within 6 months after a miscarriage is best.” Dr Sohinee Bhattacharya

“Contrary to WHO guidelines, recommending at least 6 months’ wait after a miscarriage, our meta-analysis of all published studies on this subject to date – shows definitively that less than 6 months is best.

“It is not clear why this is the case – one explanation might be that if somebody has had a miscarriage they might take particularly good care of themselves, be more motivated and may even be more fertile –but that is just speculation at this point. “

Ruth Bender Atik, National Director of the Miscarriage Association said: “This review is very important. It encourages couples who want to try to conceive soon after miscarriage, and also reassures those who worry that they may have miscarried because they conceived too soon after a previous loss.

“Above all, it confirms that that couples can choose to try again whenever they feel ready to do so.”

ENDS

 

 

 

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