Congratulations and thanks

Our warm thanks and congratulations to our wonderful London Marathon team, who gave up any hope of normal life when they started training for this 26.2 mile endurance test.

Starting the day in cold and drizzle, every one of them of them completed the distance, whether it took them 3½ hours or nearer 7.

Every one of them raised much-needed funds for the Miscarriage Association – totalling £56,889 right now and rising.

And every one of them raising awareness of miscarriage, ectopic and molar pregnancy and letting them know we’re here to help.

Here are eight of our 29-strong team: Louisa, Kate, Gemma, Nicky, Stuart, Coralie, Leon and Michelle, ready to run their socks off for the M.A..

Getting ready - Louisa, Kate, Gemma, Nicky, Stuart, Coralie, Leon and Michelle

You’ll find more photos from the day at www.facebook.com/MA.MarathonTeam.

Posted in news and events |

Good luck to our runners!

Whether you’re standing in the crowd or watching on TV, please raise a cheer for our 30-strong London Marathon team on Sunday.  Every one of them has trained hard and fund-raised hard and together they are a powerful crew!

It’s going to be a cool day and probably rainy, and for most of them, the going will get tough at some point.  We hope that there is some sunshine to warm their backs, that any wind is always behind them, that the rain is refreshing rather than drenching and that all inclines point downwards.

May the crowds, cheers, music, orange pieces and jelly babies help them on their way. And may their spirits and their feet be lifted by the reason they chose to run for the M.A. and by their part in helping people through the sadness of pregnancy loss.  It is hugely appreciated.

marathon skirt (2)

Nicky’s Marathon skirt: Remembering babies lost in pregnancy

Posted in news and events |

New ambassadors help us talk about miscarriage

We’re delighted to welcome two new ambassadors for the Miscarriage Association: journalist and broadcaster Julia Hartley-Brewer and Educating Yorkshire’s Matthew (Mr) Burton.

Both have talked openly about their experiences of miscarriage.  Both have raised funds for the M.A. and declared their support on national television*.  And both are committed to helping bring miscarriage out of the shadows and make it easier to discuss.

Julia wrote about her experiences in a powerful article in the Times on 21 March.

Julia_Hartley_Brewer web (2)

Commenting on the word ‘miscarriage’, she wrote:

“It wasn’t just a “miscarriage”, an unfortunate medical event, it was the very real death of my very real child.
“And yet, when you lose a baby before it is born, before anyone else has the chance to meet them or hold them, they’re not real. Legally, they never existed. But to me, my baby was real, a living, breathing person filled with all of my plans.”

She noted too how difficult it can be to talk openly about losing a baby in pregnancy:

“I know from talking to other women, many of whom only confided about their miscarriages when I spoke about my own, that I am not alone. In fact, many millions of women — and men too — have suffered the same harrowing pain, feel the same grief and want, despite everything, to be able to talk openly about the babies they have lost.”

 

Matthew, too, feels it’s crucial to raise awareness and reduce the taboo that can surround miscarriage.

MrBurton web (2)

In writing about his experience, he noted:

“It’s a private loss, but it’s not like any other loss. There are no memories made, only hopes never realised; there are no pictures to remember that little person by, just the cold medical terminology and the gut-wrenching pain of the moment when the word ‘miscarrying’ is mentioned; there’s no goodbye to the human being who was going to be someone – who was going to be a little part of me.

“Although that moment of loss will never go away, it’s certainly taught me a few things. Firstly, to talk about it.  It helped. Those who knew about it thought they couldn’t say the right things, I’m sure, but every supportive word helps. Sometimes it’s clumsy and awkward, but it’s dialogue, and it’s airing the issue.”

 

We are delighted to have their support.

 

* Julia appeared on BBC1’s quiz show “Pointless Celebrities” in September and donated her winnings to the Miscarriage Association.

* Matthew appeared on ITV’s “Celebrity Chase” in December, and donated his team’s winnings to the Miscarriage Association.

 

 

Posted in news and events |

A difficult issue

The Human Tissue Authority has today published new guidance for hospitals and clinics on the way they manage the disposal of pregnancy remains after pregnancy loss.

The guidance contains much to be welcomed. However, it fails to fully address the issues raised when hospitals deal with pregnancy remains.  You can read our press statement here, but we write more fully below.

 

Some of you may remember headlines last year about the way in which hospitals managed the disposal of pregnancy remains after pregnancy loss.

Most people would rather not think about this subject at all.  If you’ve been affected by pregnancy loss, though, it might matter very much, even years later.  You may want to know that the remains were disposed of disposed of with respect and sensitivity, even if you don’t want the details.

Sadly, this is not always the case.  Even though previous guidance has recommended that hospitals arrange for pregnancy remains to be cremated or buried unless parents want to make their own arrangements, some pregnancy remains are still disposed of along with clinical waste.  This is not illegal, but it’s certainly not the respectful ending that many bereaved parents would prefer.

That was highlighted in press reports last year, and especially in the Dispatches programme, presented by actress Amanda Holden.

Upsetting though that programme was in parts, it led to government ministers agreeing that it was time to improve the way that hospitals manage the remains of pregnancies lost before 24 weeks’ gestation.  The Human Tissue Authority was tasked with drawing up new guidance for hospitals and clinics and we made sure that the M.A. was one of the organisations that they consulted.

We felt this was an opportunity to drive up the standard of care in this sensitive area – just as Scotland has done.  There, hospitals must cremate or bury all pregnancy remains unless parents choose to make their own arrangements.

 

The new guidance

The guidance, published on 25 March, contains much to be welcomed. However, it also really disappoints, as it fails to fully address the issues raised when hospitals deal with pregnancy remains.

What we welcome  

It’s good to see that the guidance emphasises the need for pregnancy remains to be treated with dignity, sensitivity and respect, however early in pregnancy that loss occurred.  They have considered the varying needs, concerns and sensitivities of the women involved.  They also recognise that staff who provide information to patients need to be well informed, trained and supported.

All of that can help women to make a very difficult decision at an unhappy time.  If they cannot decide or even think about it at that time, they will have several weeks to let the hospital know their decision.  If they don’t make a decision, the hospital will decide.  And here is the first problem.

Where the guidance disappoints

If the woman does not express a preference, hospitals are allowed to dispose of the pregnancy remains along with clinical waste.  We feel this is wrong.  It seems to assume that not making a decision means not caring and doesn’t take account of the distress and difficulty that many women go through in having to make this decision.

We believe that the ‘default’ option for women who don’t decide should be cremation.  That offers respect and dignity and perhaps comfort too, whether a decision has been made or not.  This is what should be in place.

The second major problem is that the guidance refers to ‘sensitive incineration’.  This is virtually impossible to guarantee, since almost all incineration of clinical waste takes place away from the hospital.  Unless there is someone there who can ensure that these remains are incinerated in a dignified way, completely separate from clinical waste, we believe that this description is simply untrue and shouldn’t be used.

We hope very much that the government ministers responsible for this area will reconsider, and follow the admirable lead of the Scottish government.  In the meantime, we can only hope that hospital managers will themselves decide to practise the best possible standards in this sensitive area.

 

Posted in news and events |

Tell us your story

Last year we did some research to help us provide better support for young people. You can read more about it here.

The young people we spoke to said that they found it really helpful to see films of other young people. In fact, creating more personal stories was voted the number one thing we could do to help improve our website.

We’re working with a video production agency but we need your help. If you had a miscarriage or ectopic pregnancy as a teenager or in your early twenties and would be interested in sharing your story for an actor to share on camera, publishing a written version or being filmed yourself we’d really like to hear from you.

For more information or to sign up, please follow this link.

Thank you.

Posted in news and events |

“I know I am not alone”

” ‘I’m so terribly sorry…’, the sonographer began.  And with that look and those words – and that terrible, terrible silence – the worst that could ever happen just, well happened.”

In today’s Times, Journalist and broadcaster Julia Hartley-Brewer talks about her four miscarriages, about why it’s important to talk – and about becoming an ambassador for the Miscarriage Association.

Posted in news and events |

Memories shared

We know that, whether you’ve experienced the loss of a baby in pregnancy recently or some time ago, occasions like Mothers’ Day can be a painful reminder of what has been lost.  And for many, those reminders and memories stay hidden.

That’s why it was so special for people to be able to share their memories, thought and feelings on our website and on social media on Sunday 15 March,

As we suggested, many shared the image below, letting other mothers who’d experienced pregnancy loss know that they are not alone.

Posted in news and events |

Thinking of you on Mothers’ Day

We know that, whether you’ve experienced the loss of a baby in pregnancy recently or some time ago, occasions like Mothers’ Day can be a painful reminder of what has been lost.

We’d really appreciate it if you could share this image today to let other mothers who’ve had a miscarriage, or ectopic or molar pregnancy know that they are not alone and that the Miscarriage Association can provide information and support.

http://www.miscarriageassociation.org.uk/s…/how-we-can-help/

?#?mothersday?

Posted in news and events |

Making sense of research

It’s not uncommon to read media headlines reporting ‘new information’ about the causes of miscarriage.  Whether it’s low vitamin D levels, pre-pregnancy vitamins or working night-shifts, they can all make women feel blamed, that they could and should have done something to prevent their miscarriage.

It’s the Miscarriage Association’s job to get beyond the headlines, to read and analyse the research reports carefully, to discuss them with trusted advisors and then to explain what those findings mean in practice.  Often it’s about explaining the difference between a link, a risk and a cause.

Here’s a good example, from January 2014.

Vitamins

In January, 2014 the Daily Mail reported results from a Danish study* which found that pregnant women were a third more likely to miscarry if they took vitamin supplements before conception.  Unsurprisingly, the article immediately rang alarm bells, both for women and for some of the health professionals caring for them.

Reading the original research article clarified a few things:

First of all, the authors referred to a ‘modest’ increase in risk, specifically amongst women who took multivitamins in the 5 to 6 weeks before conception.

Second, the multivitamins they referred to were those in the most commonly used multivitamin in Denmark, which has a rather different formula from the pre-conception and pregnancy preparations on sale in the UK.  One key difference is that the Danish multivitamins included Vitamin A, which is generally not recommended in pregnancy preparations.

Third, this was an association, not a cause.  Even though there was a higher rate of miscarriage among the women who reported taking multivitamins before conception, it couldn’t be shown that this was the cause of their miscarriages.  There might have been something else that they had in common, other than the vitamins.

Consulting with our experts, we concluded that taking a specialist pregnancy preparation is highly unlikely to be harmful and may well be helpful if for women with a poor diet.   If you’d rather not take any such supplements – apart from the folic acid supplements that are recommended in pregnancy – a healthy diet with plenty of fruit and vegetables is probably the best start there is.

*Periconceptional intake of vitamins and fetal death: a cohort study on multivitamins and folate, by Ellen Nohr et al. Published in the International Journal of Epidemiology on 21 Jan 2014 (online)

Posted in news and events |

16-25? Tell us your story.

Last year we did some research to help us provide better support for young people. You can read a more about it here.

Words people used

The young people we spoke to said that they found it really helpful to see films of other young people talking about their experience and the help they received. In fact, creating more personal stories was voted the number one thing we could do to help improve our website.

We’re working with a video production agency but we need your help. If you had a miscarriage or ectopic pregnancy as a teenager or in your early twenties, and would be interested in telling your story on camera or publishing a written version, we’d really like to hear from you.

For more information or to sign up, please follow this link.

Posted in news and events |