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Guest post: "We must stop thinking of stillbirth as inevitable"

38 replies

MumsnetGuestPosts · 02/11/2015 16:49

The UK's stillbirth figures are shocking. We are ranked 33 out of 35 high income countries - with 6500 stillbirths and neonatal deaths each year.

An attitude that stillbirth is inevitable has prevailed and so we are complacent when it comes to informing people and educating them. But the truth is that stillbirth is not inevitable. One third of stillborn babies are born after 37 weeks - a time when they could be safely delivered. Only 10% of stillbirths are caused by a fatal congenital abnormality, meaning there is the potential to save up to 90% of stillborn babies.

The charity Count the Kicks was founded after a desperate need for more information around baby's movements was identified in the UK. We knew more could be done to save these babies. We've been asking, why are our rates so high in the UK, and what are other countries doing to get their stillbirth rate down?

This week marks the start of our Count the Kicks new baby movement awareness campaign. As a charity we want to spread awareness and educate mums-to-be about the importance of baby movements. This is an issue that is close to all our hearts. Many of us involved with the charity - including me - have lost babies of our own to stillbirth or miscarriage. Our recent poll on the issue of baby movement shows that as many as 49% of pregnant women still don't understand what baby movements they should be checking for. That is why this campaign is so important.

The TV soap Hollyoaks will be running a storyline this week in which Mercedes' baby is stillborn after she notices reduced movement but doesn't act. We have worked closely with Hollyoaks on this storyline and are confident it will be a powerful tool for awareness. While it will be distressing to watch, we would rather people were able to see it happen to a fictional character and hopefully learn from her experience - rather than it happen to them or someone close to them. In the last year, we have learnt not to underestimate the power of the media when it comes to raising awareness. We will be doing a huge amount on social media throughout the week and would urge everyone to get on board and help spread the message.

We know that awareness can make a huge difference. Look at one of the nations who has reduced their stillbirth rate by 50% - Norway. How did they do it? In short, an initiative like Count the Kicks.

The majority of mums who have a stillbirth report retrospectively that they had noticed a change in their baby's movements prior to the diagnosis. Norway identified this and launched a campaign called 'kicks count' that informed mums of the importance of their baby's movements and gave a set pathway for medical professionals to follow. This saw their stillbirth rate drop dramatically while ours has remained unchanged for the last decade.

Our campaign aims to follow the success of Norway and bring the same level of education to the UK and ensure more lives are saved. We receive daily messages from mums whose babies have been delivered safely thanks to Count the Kicks - which really highlights how important the message is. However we do still receive messages from mums whose babies were sadly stillborn. That is why we are launching our awareness week to try and reach as many mothers as possible and ensure more babies are saved.

OP posts:
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OffMyAyersRocker · 03/11/2015 12:44

I don't know anyone who thinks stillbirths are inevitable. I think the word you're looking for is acceptable.

It's a good idea re the campaign and sorry for your loss Flowers

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Floggingmolly · 03/11/2015 12:58

Indeed, OffMy. Hard to take an article seriously really, with the title containing such an obvious misuse of language.
Wish you well with the campaign, though.

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DaisyBD · 03/11/2015 13:05

'inevitable' means unavoidable. I know plenty of people that think that stillbirth is unavoidable and I can't think of any that would think it acceptable. Anyway, this is semantics and distracts from what is a really important message. Can you link to your campaign with guidelines on what pregnant women should be looking for or doing in late stage pregnancy?

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PhilPhilConnors · 03/11/2015 13:21

The campaign needs to reach midwives and drs too.
There are still too many stories about midwives fobbing off concerned mothers and continuing the myth that babies slow down their movements in the last few weeks of pregnancy.

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iMogster · 03/11/2015 13:25

At about 38 weeks I noticed reduced movement and then no movement. I went to hospital and had a scan. The midwife told me baby was fine, but very big, estimated 8lb 7oz and had RUN OUT OF ROOM. She was smiley and relaxed. I felt relieved and went home. Next time I had reduced or no movement I thought oh well, he doesn't have room and IGNORED the lack of movement.

Luckily for me he was born alive at 40 weeks. He was only 6lb 9oz. Not big at all.

I only realised recently, years later that I had bad advice and of course baby didn't run out of room, how on earth would people carry twins or triplets etc, the body stretches of course.

I bet others have had this advice and ignored lack of movement and then had a still birth.

Count the kicks is an excellent campaign.

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Doublebubblebubble · 03/11/2015 13:43

I have had a stillbirth of twins in 2012 - they died due to complications from ttts - I'm sorry not sorry but I HATE how this is worded and agree 100% with offmy though I wish you all the best with your campaign. this post has made me feel extremely...uncomfortable and I can see other parents who have suffered a loss or stillbirth feeling the same way... Count the kicks is an excellent resource for info as is S.A.N.Ds

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KittyandTeal · 03/11/2015 13:47

I have to say here on mn I think we're very good at giving accurate advice about reduced movements.

Almost every post I've read has had advice to contact midwife of labour suite etc. People who give the 'run out of room' 'babies low down towards the end' advice are quickly shot down.

I point all pregnant women in the direction of count the kicks. Most seem to know already but talking to a pregnant colleague about movements are me realise she was utterly clueless.

When I was given bad news at our anomaly scan we were given lots of hand outs from arc, when we lost our baby we got lots of hand outs and info about sands. Both have been so helpful.

I don't understand why leaflets about count the kicks can't be routinely given out at midwives appointments (I'm guessing about the 24 week mark would be relevant)

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ThenLaterWhenItGotDark · 03/11/2015 14:02

What a very odd title.

I get that the writer means "likely once you've gone past a certain time without feeling the baby move" but of course it isn't inevitable. What a dramatic and silly way of putting it.

The problem is, even though you state the UK is 33/35 for stillbirth figures you need to factor in a whole lot more data to "prove" that that means Britain is crap at preventing stillbirth which is the premise of yet another scary shocky blog.

In Italy, up to 60% of births are done by c-section. So, the babies are born generally at about 37/38 weeks. Because it's convenient for the doctor who delivers them. So, in Italy, there are likely to be fewer stillbirths because the babies are born earlier. See? Statistics can prove anything you want. Also, in Italy, from 35 weeks onwards you have the fetal monitor thing slapped on you every 48 hours. So, less likely again.

Flowers to anyone who has been affected by stillbirth. My half sister lost a child to stillbirth 12 yrs ago.

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hairbrushbedhair · 03/11/2015 14:52

I don't think inevitable is the right word either,

But aside from that - I agree. I just think its a shame awareness is so often left to charities and not the antenatal care on the NHS.

Perhaps some collaboration such as charities producing leaflets and the midwifes giving them out along with your notes at booking in

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zombiemeow · 03/11/2015 15:02

My dd was stillborn last year. I had reported reduced movements on multiple occasions to my mw. It was my first pregnancy and was completely unaware I could go to the mau, I had never been told about it. I also didn't have mn then.

I had repeatedly told my mw the movements had reduced and twice I told her they stopped completely. The second time I told a different midwife who sent me to hospital where I found out my daughter has died.... Three weeks previously Sad.

The previous midwife had always listened to the heartbeat and said it was fine. I later found out the last time I heard her heart beat it was intact mine.

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OffMyAyersRocker · 03/11/2015 15:13

Zombie I'm so sorry Flowers

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BakedPotatoChangedMyLife · 03/11/2015 15:25

Agree that there needs to be more training for midwifes and other HCPs. I am currently pregnant with my first baby and find monitoring movement a huge responsibility. When I had concerns and rang the assessment unit I was completely fobbed off by the midwife on the phone due to me having an anterior placenta. If I weren't so ballsy I could see how I could be put off calling again.

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Orange1969 · 03/11/2015 15:26

I think the word "inevitable" should be replaced with "unpreventable"?

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Maplessglobe · 03/11/2015 15:59

This reply has been deleted

Message withdrawn at poster's request.

NorthernLurker · 03/11/2015 16:50

I think this is a tricky line to tread. Yes increased awareness is important and we have to get that message through so that nobody posts here saying they've been told reduced movement is because there's no room left etc. But reduced fetal movements is only half the story and we also need to know WHY this number of babies start running in to trouble late in pregnancy.

There are many posters on this board who, like Zombie, have noticed reduced movements and struggled to get help. (Very sorry to read of your loss btw)
But there are plenty more too who haven't noticed significant change and still have been told that there baby has gone. Without warning. The last thing we need to do is to make those grieving parents feel like they should have done more.

I do agree about challenging the thought that stillbirth was 'unavoidable' which I agree is a better word than 'inevitable' I understand that very often post stillbirth, parents are discouraged from having a post mortem but tests are done on the mother and the placenta. Whilst I think I would struggle to agree to a post mortem in such a terrible situation, it also seems to me that the prevalent school of thought 'that these things happen' is also used to discourage parents from embarking on post mortem. That needs to change. A pregnancy which has progressed normally without complication should not end at 35 or 38 weeks with a death in utero, without explanation. It may end without warning and whilst I firmly support the count the kicks campaign it is with that caveat. This is only half the battle.

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Maplessglobe · 03/11/2015 17:24

This reply has been deleted

Message withdrawn at poster's request.

NorthernLurker · 03/11/2015 17:36

I guess it must vary from HCP to HCP. SANDS have noted it as a problem with complex causes here

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zombiemeow · 03/11/2015 17:38

I had a pm, took over a year to get the results back though.

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YesterdayOnceMore · 03/11/2015 17:46

Stillbirth is far, far too common in this country. The stillbirth wave of light was a shocking illustration of how many people I know have lost their precious children.

I think the decreased movements part of the campaign is starting to get through. I think move needs to be done to raise awareness that an increase in movements needs investigating too. And HCPs need to then take mothers seriously when they tell them they have increased/reduced movements.

Count the Kicks- so what can WE, normal Mumsnetters, do to help?

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TheMshipIsBack · 03/11/2015 17:47

I'm in Scotland and at my 22 week appointment today I got a kick counting leaflet.

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Duckdeamon · 03/11/2015 18:01

Important campaign, but I hope you weren't suggesting that 90% could be prevented mainly by mothers being more alert to changes in movement.

As NorthernLurker says, "the last thing we need to do is to make grieving parents feel like they should have done more."

Are you also campaigning for better antenatal care? More research and a range of action?

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indyandlara · 03/11/2015 18:26

We had a pm but were told that many people refuse to have one. Results took 7 weeks.

Stillbirth is a very emotive subject and you must be very careful with the language you use. We don't need to shift to a culture where mothers are left believing they are to blame. Most of us live with enough guilt already.

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goldlion · 03/11/2015 18:53

This post makes me feel very uncomfortable too.

My first baby was stillborn at 39 + 2. I agree with a lot of the comments on here. You seem to be implying that the mothers are at fault as they didn't notice or act on reduced movement.

We had a full post mortem (which the medical team advised) plus loads of tests on me and he died of sudden hypoxia; there was meconium present in the waters but not in his tummy so he died instantly. He was a perfect baby as they all are who died and they could find no known cause. They guessed it could be something as simple as the cord being trapped. The pm results took 4 weeks.

Good luck with the campaign but please be mindful of the language you use.


But good luck with your campaign regardless;

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RueDeWakening · 03/11/2015 19:04

I was going to post pretty much what doublebubblebubble said - I lost two of my triplets to TTTS/unsuccessful laser ablation, they were delivered 5 weeks after their death was confirmed.

I completely support Count the Kicks, and have since it launched, but please be careful how you phrase things.

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780539gjg · 03/11/2015 19:13

Very misleading to suggest that just because 90% of stillbirths are not caused by fetal abnormality, they are preventable.

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