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

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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.

14 years since my DS was stillborn I still think of him every day
I always think was there something I could have done
According to this there was

I feel crap

In my (limited) experience I've found the possibility of stillbirth taken very seriously indeed by the medical profession. Leaflet during pregnancy, a chat about how to monitor movements, asked about them at every appointment etc. It was stressed they don't reduce at the end of pregnancy; in addition as a 40yo first time mum I was incredibly closely monitored particularly in my last month. I turned down an induction at 39+6 that was being very very strongly recommended due to my age. Ironically given the talk here about use of the word inevitable, my consultant and several registrars I talked to all talked about stillbirth as practically a foregone conclusion if I didn't have the induction. I made my informed choice and all was well, but I certainly couldn't accuse anyone of ignoring the risk. I also spent plenty time in the day bed unit and overheard lots of reduced movement monitorings. Again the midwives without exception stressed how important it was to be checked and that they would happily see nothing but false alarms. So as I said I'm just one patient but it was taken incredibly seriously.

I'm all for awareness but after a nnd 3 years ago I too don't wish to feel like I should have been more aware. I had monitoring with the fetal heart monitor. It was fine.

Baby really wasn't. If medical professionals don't pick up on babies being distressed how can we expect mothers to?

Training and info needs to be driven by medical professionals who see pg women every day, not relying on women who might be experiencing their first pg.

One of the things I said to my consultant after my twins died (tts one stillborn, 1 neonatal death) was that I wished that they had told me what the warning signs were. Reduced movements being one. I read the article thinking that if one mother to be seeks advice on the basis of CTK advice, and one baby is saved, one mother doesn't have to endure the heartache then it is worthwhile. I feel guilt every day that I didn't save my babies, but no article can make me feel better or worse. If it helps someone else then I am glad. Love to you all feeling the loss of your little ones and keep up the good work Count the kicks x

I also agree that inevitable is a bad word to choose - perhaps "one of those things" would have been a better choice of phrase. Because indeed that is often used - "so sorry you lost your baby, it was just one of those things that happen."

I have a friend who lost her 4th baby at 39 weeks - she also reported reduced movement and felt that something was wrong - she was fobbed off (this is in Australia, it happens here too) and her baby died due to micro clots in the placenta, from my friend suffering from anti-phospholipid antibody syndrome - so oxygen starvation, effectively. She feels very strongly that her baby could have been saved if only someone had listened to her when she first said she thought movement had reduced :(

I had reduced movements and a feeling that something wasn't right. Fortunately my health care team that day took some notice and my son was delivered at 34 weeks with undiagnosed iugr. He's perfectly healthy but it makes my blood run cold how close we came to a very different outcome.

The article was not intended to cause offence, but I have spoken to many professionals who are reluctant to discuss stillbirth with expectant parents as they think 'what will be will be' and following a stillbirth there is often the attitude that it happens for a reason or its just one of those things. This is one of the things we are campaigning to change. We can do more to prevent stillbirth and we should not accept it as just 'one of those things'.

My baby was born 23 years ago so I expect things have changed. I went to the GP about reduced movement and a very young doctor did a doppler test & confirmed he could hear the heart & could tell it was the baby because it was fast.
After my daughter arrived stillborn he admitted he hadn't noticed I took Ventolin which will speed up the heartbeat & that he was probably hearing mine.

I think hcp need to highlight the risks and to take mother's more seriously.

My sister's daughter was stillborn. My sister went to the hospital to be monitored and sent away being told she'd wasted the drs time... two weeks later she dithered about reduced movement and ended up not going to be monitored when she first noticed, waiting 24 hours. Her baby had died and she had to deliver her a few days later. The baby was 32 weeks. If the original Dr had not told her off for wasting his time the first time she went in for monitoring, she would have got there quicker the next time and she may have a three year old little girl, instead of a tombstone. Personally I blame the Dr. Completely.

I've hesitated to write this post. I don't really know how to put it withoit getting very upset. But the Count the Kicks campaign has been a real source of mental anguish for me since my child was stillborn last year. It's a (fairly large) part of the reason I became suicidal after losing my son, in fact. And it is still very much a trigger for me now.

According to CTK (at least it is how it comes across) 'good' mothers are in tune with their babies' moments. 'Good' mothers are advocates for their babies. 'Good' mothers don't let their babies die.

So what does that make me then? I didn't notice my son was dying/had died for several hours. I thought he was having a quiet day, as he sometimes did- but he always kicked up a storm at night. Until the night he didn't.

According to CTK, my son would have lived if I'd paid better attention. Can you imagine how it feels to have that implied? To live with that?

And I know they'll say it is important to raise awareness. And I agree but here is the thing: I thought I WAS following CTK advice, which at the time I had read was to choose a time when your baby is busy and focus on your baby's movement. I did at 8pm every night. The night before he was as active as ever, the next night, after a busy day on my feet - nothing. We didn't hesitate to rush to hospital, and there was no heartbeat.

I've since heard a lot of women are told by their doctors to count ten kicks a day - well that could have been more helpful for me, as I would have been alerted to a lack of movement sooner (whether that would have changed things is doubtful, as it was acute).

Or there are other women told to count kicks at mealtimes, three times a day.

Others who are told not to get out of bed in the morning before getting 10 kicks.

My point is, even the name 'Count the kicks' is as confusing and misleading as it gets. You go on the page and it's as clear as mud what 'count the kicks' actually means. What are we counting? Oh wait, we're not actually counting? We are just supposed to keep track of baby's movements? Their 'pattern'? (If indeed they have one). What is the bracelet you're selling for if we aren't counting? I didn't and don't feel empowered; I feel bewildered.

Every time I see something about CTK on Facebook or the news that I know my friends will be reading too, I get this awful feeling that they too are thinking, well, if only she had paid better attention...

I applaud your intentions. I think it is marvellous you want to save babies. But God I think you need to work harder on the clarity of your message (which actually added to my confusion) and also the message you are putting out there to loss mothers like me. That we didn't do enough, that we aren't enough, that our babies deserved better.

Lavender - such a tragic loss for you :(

I think your post is very valuable - you're right, things need to be clarified - but I'd be shocked rigid if anyone, especially your friends, thought that you were in any way to blame for your own loss. You did everything "by the book" as you were told - and still something went wrong. That's a tragedy, but it is NOT your fault. (((hugs)))

Lavender - I'm so sad to hear of your terrible loss. How tragic to lose your precious son.

The CTK campaign is great, but it can't possibly save every single baby - you did everything you could for your baby. He was most active in the evening so that is when you noticed that he was no longer kicking. If you had counted ten kicks in the morning, then what difference would that have made?

Agree with you about the title of this thread - it's a pity it hasn't been changed as several posters requested.