New Lancet report into Stillbirth says mothers uninformed

[grumblinalong]

You can read the article here:
www.uk-sands.org/no_cache/News/Newspage/article/194/22.html

I don't want to upset anyone, I know hormones are raging & the subject is very difficult but I'm 30 weeks pg with dc3 and I am shockingly uninformed about stillbirth, as are 42% of expectant mums according to this report. There are so many threads on here asking about reduced movements too, I just thought if it raises awareness for one person it will be worth it.

[prettywhiteguitar]

thanks for the link I heard it on the radio this morning but they didn't go into much detail

[LittleMilla]

I am 38+4 and was reading this on BBC this AM. My MW was actually very good yesterday asking about movements etc and saying that if anything changes, even a little, I need to get in ASAP for monitoring.

Had no idea about the figures though - it's scary. And not really what you want to see when you're waiting for baby to appear...but I must reassure myself that i've had a very healthy pregnancy. Although that appears to count fr diddly-squat, really.

Thanks for sharing grumbling

[janedoe25]

I do believe the fear of upsetting/worrying pregnant women is one of the reasons stillbirth are a "taboo" subject. I for one am so grateful that the Lancet has published the findings and the media have reported. The Stillbirth rates in this country are disgustingly high. I was also very naive to them until 28th feb 2011 when my daughter was stillborn.
We are all well aware of the dangerous of the first trimester and miscarrying, i know i was not alone in thinking that after the 12 week mark my baby was fine. How wrong was I?

grumblingalong thank you for your post, as you say if it helps raise awareness for just one person then it is more than worth it!

I also found this site helpful.
countthekicks.org.uk/

[buttonmoon78]

Janedoe I'm sorry you lost your daughter. I'm on #4 and I must confess that to me, the thought of stillbirth has always been far more on my mind than MC, and that's having had a MC in the past. The thought of carrying your baby all that time and then still losing it makes me cold all over. I truly feel for your loss.

Women are shockingly ignorant. Although it's 'embarrassing' I would far rather end up being monitored for an hour or two to be told everything is fine than forever wish I had. I did this twice with dd1, once with dd2 and not at all with ds. Now I'm pg again, I still watch out for every little kick and bump.

I'm normally a very laid back person but I think that it really is not worth not taking seriously.

[NewMumJuly11]

I saw this news article this morning and it completely freaked me out. Although I had been worrying about lots of things, still birth was just not something I had thought about. I live in the East Midlands which seems to have a pretty bad record. Suffice to say when I see my midwife on Tuesday I am going to ask her about this and request more monitoring! It will be interesting to see if this is something they agree to. I know resources are stretched but the thought that the risk of this could be reduced by more monitoring must be a good enough reason for increased care.

[nunnie]

//www.uk-sands.org/no_cache/News/Newspage/article/194/22.html

clicky

[halfcaffordableLidlEasterEggs]

I was thinking about this recently when there were a couple of 'high-profile' (ok b-list celebs i.e. Lily Allen - 6 months and Amanda Holden - 7 months) stillbirths. In newspaper articles I saw both of these described as 'miscarriage' too.
I know one person who lost their baby at birth, but did not know how common it was.

[Substandard]

I asked the obstetrician who did our debrief after our daughter's stillbirth if a proper mention of stillbirth could be made in the nhs ante-natal class as we felt woefully uninformed as the realities. She said there was not a cat in hell's chance the word stillbirth would mentioned to a bunch of heavily pregnant women upsetting them. Subject closed. We did not push the subject as it took all our strength just to get through the details of our daughter's death and birth. Something we might not have to have been through had the subject not been glossed over in favour of pretending to breastfeed with dolls and knitted boobs.

[buttonmoon78]

Yet doctors will scare the crap out of any mother who resists too much monitoring/intervention during labour substandard? They are a weird bunch for sure. It will never be less of a loss for anyone who has to go through that, but perhaps if it a talked about risk then people will be more aware of it.

And I also agree with you Halfc - to describe it as a miscarriage is just wrong and devalues the grief any family in this situation.

[Housemum]

It would be interesting to have more details of reasons (where known) - I have known of 2 people lose a baby to Group B strep infection yet it is not routinely tested for in this country (and I am prepared to be flamed, as the last time I raised the subject of testing I was bombarded by some kind of no-intervention brigade - I know that early testing is not always reliable, but surely anything that saves some lives is worthwhile as the tests are not hugely expensive afaik?)

[SerenaJoy]

I for one want to be as informed as possible - I may be pregnant but I still have a brain and I don't want to be patronised. I know it happens, and I know it could happen to me just as easily as it could happen to any other pregnant woman. There but for the grace of god go I, and all that.

I don't understand why they think it's better for pregnant women to be uninformed about something so truly awful, than to have them a bit upset. I know it's not the same but if you applied that logic ('we better not mention it in case it upsets people') to cancer or heart disease or any serious illness, then where would we be?

So sorry for the loss of your daughter, Substandard

[Substandard]

Thank you serenajoy and I agree with you wholeheartedly. We ARE adults. I think unnerving a group of women by making them more aware is well worth it. After all they will get over any fear the minute their baby is born safely. We will never never get over it even after subsequent children. Not wanting to spoil a pregnant woman's 'special time' with facts is infantalising. A vague mention of call your midwife if anything different happens is worthless. Everything is 'different' when you have never had a baby before.

[serendipity16]

I get quite annoyed with lots of peoples attitude & ignorance about stillbirths.

I think there should be more about it in the press & available to everyone.
There are women who are clueless....although upsetting its something that every woman should be aware of. No one likes to think it'll happen to them but i think its important to be aware of stillbirth,

Then theres everyone else........... loads and i mean loads of people think of stillbirth as 1. A miscarriage and 2. Not a big deal.

I have come across so many people family & family friends who think that the loss of my daughter is no big deal. One comment i heard was "Why is she so upset, she never saw her eyes open, never fed her".

Maybe i'm upset because my baby died, i felt her kicking and moving for months, i imagined all the things she'd do as she grew up, i gave birth to her, i arranged her funeral, i went to buy her clothes to be buried in, i held her coffin.
Had my baby been born for whatever reason the day before.... she'd be here now. A 6lb 8oz baby isn't a miscarriage.

Its also the same in October when its baby loss awareness week.... it doesn't get anywhere near as much press coverage as breast cancer awareness. I'm in no way knocking breast cancer awareness month but there is room in the 'press world' to cover both. So many people don't talk about baby loss in general & its sad.

My sister had a stillborn daughter when she was 16, i had a stillborn daughter when i was 23 & my husbands cousins daughter had a stillborn daughter last year & i think she's about 18 or 19.

I was fully aware of stillbirth but that didn't prevent it happening to me. There were no signs, no chance to save her life.

I think the report goes on about older mothers but as you can see including myself the 3 of us were young. I wouldn't want younger girls or girls in their 20s feeling 'safe' because they aren't old or don't smoke etc.
It can happen to anyone old, young, fit & slim, obese or non-smoker.

[buttonmoon78]

Serendipity I am truly shocked at that comment. I am 'only' 25wks with #4 yet if I lost this one now I would be utterly devastated. We have played games of push where the baby responds etc, I feel I am learning to know them in the same way I did #s 1,2&3. To lose a baby when you're on the commonly perceived home straight must be absolutely shattering.

I truly hope that I never have to learn that for myself but I do think that the burying (for want of a better word) the subject is utterly wrong.

[janedoe25]

serendipity I too am so shocked that someone would say that to you! I was a aware of stillbirth but didnt think it would happen to me either, i wasn't aware at how common it is.
On the 28th feb2011 my daughter was stillborn and over that weekend in hospital there was two other babies stillborn.

Women should be made aware of the risks at antenatal appointments, there are posters all over health centres about cot death when the stillbirth figures are much higher and should therefore be highlighted.

[serendipity16]

Sorry for your loss Janedoe25. It breaks my heart when i hear of another woman having a stillborn baby.

People are very insensitive regarding pregnancy loss. I mentioned this is another thread the other day but my MIL said "you should feel lucky, i know a woman who had 15 miscarriages". I've had 4 miscarriages & an ectopic as well so i understand the pain of miscarriages yet i still wouldn't think of myself as 'lucky'. You can't compare the two, both heartbreaking but there is a difference.

When i had my ectopic & still in hospital recovering from my surgery both my brother & SIL texted me & said basically along the lines of ....... well at least you have kids, some women have none. Utterly shocked that they'd both disregarded the loss of my baby, even though i was only 8-9wks.... it was still my baby.

I don't want to scare people about stillbirth but i feel very strongly that its a subject that needed to be spoken about & not brushed under the carpet.
If a campaign to raise awareness saves just 1 baby then it'd be worth it.

[G1nger]

I agree about awareness raising, but there is a flip-side. I read the article this morning on the Tube and started crying as I did so. I'm very susceptible to worrying about my and my baby's health, very much as a hypochondriac response. I worried all the way through conception, having heard previous awareness raising along the lines of "beware, pregnancy doesn't happen for everyone", and always thinking afterwards that I would be that person it didn't happen for... and now I'm worrying all through pregnancy. I mean, it's right, isn't it, that we should be aware of the need to feel our baby's movements (when they start, of course) but I just keep thinking of all the things that could go wrong... and the article I read in the Guardian today (which was very upsetting, and very much aimed at being emotive, as well as being informative) just encourages me in this ... Maybe that's my problem, though.

[InMyPrime]

Information and monitoring is something that healthcare staff generally seem to not be so keen on. I was lied to about the severity of pain or other complications that I might experience due to an MMC and when I asked afterwards why I was never told how bad things might get, they just said 'well no-one wants to worry patients'. It's a very paternalistic attitude. Add to that a general social fear / taboo around pregnancy loss and it's no wonder so few women are aware of the reality of stillbirth / late miscarriage.

Being well-informed is very important for a healthy pregnancy. They are keen enough to pump us full of information on breast-feeding, lifestyle directions and dire warnings about alcohol, after all! I tend more towards the worrier end of the scale, because of my previous miscarriage so have been quite anxious about this pregnancy (now 16 weeks). The only antidote for me was to pay for extra scans and reassurance with a private consultant. Not everyone has that option. I think medical staff need to credit women with a bit more intelligence and just give us the information and access to monitoring that we have a right to instead of treating us like children.

[grumblinalong]

Thanks for all the interesting perspectives on this thread. janedoe, serendipity and substandard thank you for coming here and talking so candidly about such a personal experience, I know words aren't enough but I'm so sorry all three of you had to go through experiencing stillbirth firsthand. I'm glad you were not offended by the thread but support widening education about the subject.

Out of 15 posters on this thread 3 have experienced stillbirth which just shows how common but 'taboo' it is. I have been hyper aware of complications in my current pregnancy because it was a twin pregnancy but one twin didn't make it past 12 weeks and with having 28 weeks of hyperemesis the remaining baby is struggling to grow. When the MW measured my bump last appt it was measuring 25 weeks when I was 29 weeks. She dismissed my concern by saying 'It's nothing you should worry about'. When I said that my obstetrician had said I'm at a higher risk of stillbirth because I'm underweight, have HG and it's a failed twin pg she looked at me and said 'Stop winding yourself up'.

I was really angry because she definitely WAS infantalising me, I was asking for facts and she dismissed me. I don't care that the subject's facts may upset me a little, I'm a pg woman not a child. Telling my two DS's that the baby they have been talking about and waiting for is not coming home would be much more devastating and I want to be educated enough to know what the risks are.

If women start demanding to be informed about the subject then hopefully the health professionals attitudes about causing what they perceive as 'unneccessary distress' will change.

[prettywhiteguitar]

Good god "stop winding yourself up" ??? I think I would have requested another midwife on the basis that she wasn't taking the facts on board from another professional

fuming on your behalf !

On the subject of this thread I have found it very useful and I am now much more aware and checking movements (i'm 36 weeks now) as I mentioned as its my second pregnancy I thought the hard bit was the first few months again but really I am much more concerned about the last bit and labour, now i am informed of what can go wrong I can be on alert a bit more

[Cattleprod]

I'd like a lot more detailed information. We are told scary general statistics like '6500 per year', '1 in 200' and '4.5 per 1000', but it's impossible to work out your own personal statistics.

It would be really useful to know how many of these stillbirths were higher risk pregnancies - multiple foetuses, drug users, heavy smokers, alcoholics, certain ethnic groups, older mothers and whatever else increases the risk, and how many were by chance or bad luck. And for the stats to be broken down so people can assess their own risks based on their lifestyle and circumstances.

For example if I knew that my personal risk was 1 in 1000 rather than the average 1 in 200 then I would feel significantly less stress in later pregnancy. Conversely if I knew my risk was 1 in 100, then I could be extra vigilant and perhaps book extra scans etc.

I'm so sorry for anyone who has experienced stillbirth, and cannot imagine how traumatic it must be. And I thank those brave enough to share their experiences to raise awareness so more can be done to prevent more stillbirths in the future.

[janedoe25]

cattleprod i had a textbook pregnancy with no problems at all, i dont smoke, drink, don't take drugs and im only 29. we chose to have a Post mortem on our daughter and are still waiting on the reults but we have been warned that there will be a very good chance the results will be inconclusive.

[Cattleprod]

janedoe I'm so sorry. It must make it seem even harder and more unfair knowing that you did everything right and still things went horribly wrong. I hope you are getting lots of support in real life.

The medical world really do need to do more research into finding out the causes of stillbirth, and what can be done in terms of monitoring and public awareness to do something to bring down these terrifying statistics so fewer people like janedoe have to cope with such heartbreak in the future. Lets hope this report and the recent high profile stillbirths of Lily Allen and Amanda Holden spur them into action so something is done.

[louisesh]

I too agree the subject of stillbirth should be discussed at ante natal classes.There is loads of health promotion / info on cot death prevention , as SANDS quote "there are 10 x the amount of babies lost to stillbirth as there is cot death".However, being a health professional myself i know it isn t ever going to happen.
My daughter was stillborn at 41 weeks in October 2010 after a very well monitored pregnancy with many extra scans [due to a history of MCs].We had a full PM and Georgie died as a fluke of bad luck as from me the placenta was infiltrated with E coli which is a bacteria we all having inside us with no signs or problems. I had my 2 nd sweep,lost my plug which allowed this to happen.Up to that day her heartbeat was always loud and strong.
Still in this country we view stillbirth as a taboo subject it needs to be out there and discussed.More research needs to be funded/conducted.I m sure you other ladies agree it really is the worst thing in the world to happen and myself,my dh,family and friends certainly can t imagine any worst situation we ll have to face in our lifes.
I don t smoke,drink,take drugs etc....I m healthy etc....I attended all my appointments.My mw who delivered Georgie told me yesterday [i m still in touch with her] that recently on her ward they ve had a "spate" of stillbirths ranging from babies at 24 -term + all a different variety of women.No correlation in reasons why the babies died.
It is a truely horrible experience and unfortunately if reading about stillbirth upsets people at least more people may be educated and made aware this is in fact still happening and way too often.Its way more upsetting to have to live through the experience and learn to live without your child.