Strep B

[MaggieW]

I carry strep b and am pregnant. Dr's are all saying I'll need to be on a intravenous drip for antibiotics as soon as I go into labour. While I don't want to jeopardise or risk my baby, has anyone had any experience where they've worked around it another way please? I also want ot know if an intrav will slow down labour as had very quick one last time and would like a repeat performance! Thanks.

Signatures on EDM have risen again - now 187!

Frederique, sadly it is not uncommon that a doctor at an ante natal clinic knows little about Strep B.

Frederique and any one else interested in the issues:

If you are in the UK and feel strongly about this being wrong, you could help promote awareness by:

Asking your MP to sign EDM 1211, if they have not done so already.

Also in UK or indeed anywhere else, you could:

Make posters/leaflets available at your ante-natal clinic or health centre (you can obtain these from GBSS support).

Let other mums/dads know about Strep B and the issues surrounding Testing/Treatment (eg speak at local Mother and Toddlers group, Women's group etc or even just tell friends or family).

Raise money for GBSS group.

These are just a few ideas. You may have others of your own - if you do, why not share them here.

IMPORTANT UPDATE - ACTION SOUGHT!

Earlier today, I took it upon myself to write directly to David Cameron, the MP who kindly laid down the Early Day Motion. My letter was asking if EDM's were mere 'lip service' and if,as a goodly number of MP's had actually signed to date, anything further could be done both by him and by individuals like ourselves, to actually ensure that the issues before government did not go away. I am pleased to say, unlike my other direct attempts to Mr Blair and Mr Reid, David replied promptly.

I herewith copy his reply, with my address deleted:
***
Subj: RE: Early Day Motion 1211 - Strep B infection in Babies
Date: 03/07/2003 18:53:26 GMT Standard Time
From: [email protected]
To:
File: Violet.jpg (7357 bytes) DL Time (46666 bps): < 1 minute
Sent from the Internet (Details)

thanks. you are right - edms are lip service, but the point was to secure a debate so that I can raise all the issues in the house with the health department. I now have this at 11am next Wednesday for half an hour - 15 mins from me and the same from the minister in response. Let me know if you have a specific point you want me to make.

David

*

I think it would be excellent if we on mumsnet could put together a collective list of points. I realise that David will not have enough time to cover too many areas, but think it would still be very worthwhile doing so. If anyone agrees, and has a point they would like included, please contact me as soon as possible via this post or the 'contact another talker' option. Whilst you could contact him individually, I feel a collective response might have more impact.

Thank you.

Re: IMPORTANT UPDATE - ACTION SOUGHT

Forgot to add, I feel it would be very worthwhile asking your local MP to be present at the debate (if at all possible) as the higher the numbers in attendance the more widespread awareness among MP's will be and the better the chances of an effective debate. .

An email to them, giving the details (ie date, time, subject) and asking for support, would hopefully be beneficial.

Come on folks.....everyone has gone quiet on me....HELP REALLY IS NEEDED......thanks!

(sorry, just posting again to try and catch those interested in the issue and any others who weren't aware of it, yet!)

Sorry, haven't been following the discussion and don't really know much about Strep B.

Rhubarb,I was trying to bring this to the attention of those who have posted on this thread and are aware of Strep B.

I thought I might catch some of them if they were about, as I hope to draw together some issues before Wednesday.

Never mind though, thanks very much for looking and sorry if you thought I was having a go.

butterfly mum, I think that the only point most of us will be wanting raised is the lack of knowledge in the medical profession about this potential killer and why reliable swabs are not routinely done. Its not expensive to diagnose or treat, but things like Downs are screened for when probably less likely.

I mean US statistics quote 1 in 5 pregnant women, so why is the NHS/government burying their head in the sand?

Bringing up anything else would just be icing kwim?

It's ok, I just didn't like to see you posting away without getting any replies! Wish you well!

Butterflymum,

I agree with pie - the key issue is knowledge, or lack of!, in the medical profession about preventing GBS infection. I'd also like to see raised why GBS is not mentioned in routine antenatal appointments to all pregnant women - when as I understand it 1 in 4 women carry GBS at delivery and 1 in 300 of them will have a baby with GBS infection if the antibiotics in labour aren't administered; why there isn't routine testing in the UK at 35-37 weeks using the reliable tests; and why the US, Australia and other European countries are ahead of us on this - are we some third world nation here when it comes to our babies????

Just a few thoughts - keep up the good work, Butterflymum .

despite having one child and now being 21 weeks pregnant, the first I had ever heard of Strep B was fairly recently thanks to this website. Just want to say a huge thank you to all those of you who have taken the time to tell your stories and pass on such valuable information. I am sure that for some of you it must has been such a painful task to tell your tragic stories and hope that knowing you are helping to inform more women provides a little comfort.

I have never ever been tested (as far as I know) for Strep B and am fairly well - should healthy women with pregnancies that are progressing normally ask their doctors for a test ? If so, at what stage in your pregnancy? does anyone know why mw and GPs seem to "avoid" talking about Strep B (so many meetings during pregnancy amasing that it can?t even be addressed and so many leaflets often stating the obvious/repeated in different formats and yet nothing about this one with very scary stats. - maybe the lack of definitive testing means that they are more careful about what they tell us?)

stripymouse, I asked my GP this question yesterday. She said that I was welcome to have a test if I wanted it and she acknowledged that it's routine in the US at 35 or more weeks. However, she did say that you could be tested one day and be negative for GBS and then you could be positive the next day. Or you could be a carrier and not transmit it to your baby. And she said the same as with scans, it depended on what you'd want to do with the knowledge - i.e. if testing positive meant you'd go for IV antibiotics in labour then go ahead but if you definitely wouldn't then why bother. I did ask whether, since I hadn't had it last time (to my knowledge anyway, no test), it was likely this time and she said "you could have had it last time but since no-one tested we'll never know." So it seems to me that it's one of those things that is fairly rare and it's up to each woman to make a judgement call on whether to have the test or not. I think I'd like to look at the GBS site and stats for incidence before I go ahead. But I wouldn't even have heard of it if it weren't for this thread so thanks to all here. I'd be interested to hear Mears/Leese's view on routine antenatal GBS testing (apologies if they've said, will re-read whole thread in a minute when I've posted this.)

Butterflymum. Thanks for contacting me!! Great job contacting David Cameron.

What I want to know is why the goverment keeps dismissing GBS? I know that they couldnt always guarantee the results of GBS, but now with this reliable test why are they not doing it? They should at least give pregnant woman the option of taking the test!
The most annoying thing also is that GBS can be at least treated with a simple course of antibiotics whilst in labour!

They cannot cure Downs Syndrome but they still test for it!

I think the British goverment should be totally ashamed of themselves, instead of fighting useless wars they should put there money where it is needed!! I would love to do a demo in London to show them that we wont just shut up and leave this alone!!!

I had an appointment in our local hospital on Thursday, and with me I took some GBSS posters to put up....I cant believe the opposition I faced!! I got told that I should not put posters like this up as I will scare pregnant women, but Im sure they will thank me If it comes to saving there babys lives!!

Thanks Butterflymum!!!

Thanks for your comments Stripeymouse and WWW.

Better teting is now availabe - that is part of the point of the campaign. The new test, (available privately at approx £18 cost) is more sensitive to and specifically designed for the isolation of GBS. It is performed once, at 35-37 weeks.

Yes, current NHS testing can miss up to 50% of
carriers.

Here is a quick numbers check:

• up to 30% of women are carriers, without it causing problems or symptoms

• around 1 in 1000 babies in UK each year develop a GBS infection (ie about 700 babies)

• GBS is the most common cause of bacterial infection in newborn babies in the UK

• intravenous antibiotics at delivery, given in appropriate circumstances, means risk of baby developing GBS infection falls from around 1 in 300 to less than 1 in 6000

Yes, we hear about so many things and are given so much information at ante-natal clinics, but how much of what we hear can have such an impact on newborn babies as GBS does and can be, in most cases, prevented?

Hi Drib,

Only just seen your post - thanks - it must have come up while I was writing my other one..

I will add your comments to the others I am sending to David.

That was a pity that the hospital would not put up some GBSS posters - especially after your own experience. We receive so many leaflets ante-natal on what foods/animals to avoid because of possible infection yet GBSS - nothing! It does not seem balanced, the approach taken to leaflets/posters.

We can never hope to completely cover every single possible issue that could affect a pregnancy but surely one wich is already proven to be the most common cause of bacterial infection in newborn babies in the UK should merit some more attention than it does?

Despite the problems with the posters Drib, I hope your appointment went well and that you have been given the assurances you sought regarding testing/treatment in any future pregnancy.

Take care and thanks for all your help.

I thought... the concern about Strep B involves two groups at high risk of infection:
l. premature infants under 37 weeks gestation
2. any infant in utero with membranes ruptured longer than l8 hours

Am I wrong ?

I have been watching this thread with interest but didn't want to butt in until I had something positive to say, but since www has made a mention I will tell you what happens in our unit.

At the moment we do not routinely test for GBS because the yest is so unreliable with false negatives. However, we are doing High Vaginal Swabs for women who present thinking their water might have broken, to pick up any signs of infection. Often the waters have not actually broken and it is really a watery discharge. If that swab result comes back positive for group B strep then we offer IV antibiotics in labour.

Once it has been detected in one pregnancy, antibiotics are offered in labour for all subsequent pregnancies.

We also give antibiotics to women whose waters have been broken for a long time, who develop a temperature etc.

I am trying to get our procedure changed in that low vaginal and rectal swabs are more reliable. The new US guidelines have been published and now, thanks to mumsnet, I have learnt about the new type of testing which is not available on the NHS as yet.

There has been a reluctance to routinely swab women because many do have GBS without ever having any problems. There is a concern about the widespread use of IV antibiotics, as that is not without side effects.

However I have been in the position being with a woman when the the heartbeat disappeared in the second stage. The baby was stillborn despite resuscitation attempts immediately as she was born. The labour had been totally normal up till that point, the mum spending most of her time in the pool. The post mortem results showed that the baby had been infected with group B strep.

I am raising awareness amongst my colleagues of current guidance on the GBS website but it is a slow process. Scotland has devolved health so the EDM does not have such significance here as it does in England. I will however keep raising awareness and let you know what happens.

Mears, this is probably a silly question but can you clarify what the risks of iv antibiotics are please?

Also, sorry I havent been on this thread for a while, just more immediate concerns (namely moving house and fertility treatment). I am so glad there is a core of Mumsnetters here pushing for GBS to be more recognised. Good luck to all of you, I will devote more time to this cause in the near future.

Mears, thank you for taking the time and interest to share your experience on this thread.

It is good to see that someone in a position to hopefully help change procedures, albeit at the moment only in your own unit (I assume), is aware of the new tests and the higher accuracy of low vaginal or rectum swabs (I assume you will already have the Omnilabs leaflet detailing the new test - if not, this is available via GBSS).

It is also excellent that you are raising awareness among your colleagues - this is very important as sadly, as is still the case, many health professionals themselves are not aware of the issues.

The EDM is as relevant for Scotland (and indeed Wales and Northern Ireland) as it is for England. The issues are the same throughout the UK. Indeed, a number of Scottish MP's have already signed the EDM (total numbers throughout the UK today stand at 196).

In Northern Ireland, where I am, I have recently asked the Department of Health to provide me with details of current policy within the Province for testing and treatment of pregnant women. Perhaps not too surprisingly, they have been unable to provide me with an answer yet, except to suggest that I contact the four health board areas directly, as indeed this is what they themselves, the Department of Health, would have to do to find the answer!

Once again, Mears, thank you for your input and the steps you are taking to help (ps are you aware of or have you read the British Paediatric Surveillence Unit's report on Strep B - page 17 to 19 in particular?).

Sweetypie, sorry I have just noticed your question.

There are six areas - these are detailed fully on the GBSS website or on their leaflet entitled 'GBS and Pregnancy'.

Hope this helps.

bunny2 , thanks your your continued support.

Thanks butterflymum. I haven't read the report - do you have a link for it? I tried searching for it but didn't find the correct one.

What I meant about the EDM is that decisions regarding health are devolved in Scotland, even though there are Scottish MPs in Parliament. The Scottish Executive Health Department may take cognisance of what is happening in England but will not necessarily follow suit - although you would hope they would.

I meant to say in my last post that I am also concerned that the womaen who have been treated with antibiotics in labour go home without any written advice incase their baby should become ill. As far as I am aware the antibiotics in labour prevent early onset inection but not late onset. What do you think?

Hi mears,

I have links for that report and another interesting one carried out in Finland(?) if I remember rightly). If you want to contact me via 'contact another talker' option I will get back to you with both.

Sorry, i realise now what you meant about the devolved parliament issues (silly me) we have similar problems here although, like you, I would hope they would follow suit.

I understand late-onset has not been as fully documented as early-onset and, like you, it is my understanding (although I am not in the medical/nursing profession - I did however work in Management within the NHS) that the antibiotics in labour are more relevant to the early onset infection (I understand that early onset is known to be what is termed as by 'vertical transmission' whereas late onset is more likely to be by 'horizontal acquisition' ).

I fully agree that information should be given to mums on discharge (those treated themselves in labour and/or with babies not treated after birth especially). In my own experience, only a very limited amount of verbal info was given. This was not enough. I believe the info should cover all areas, ie about early onset, late onset and risks in future pregnancies (various leaflets etc are available from GBSS).

Thanks butterflymum - I have sent my details.

This is just a short post to show that MP's from various parties are giving support to this issue:

Signatures (196)
----
Conservative Party 76

Democratic Unionist Party 3

Independent Conservative 1

Labour Party 84

Liberal Democrats 22

Plaid Cymru 2

Scottish National Party 4

Ulster Unionist Party 4

As previously mentioned, I am drawing together various comments/issues from this post to pass to David Cameron for his information (and hopefully use). The debate is in the House on Wednesday.

I hope to complete this by later this evening and just want to catch anyone else who may wish to add something.

(I apologise to anyone who is fed up seeing this post being 'bumped up' but hope you will appreciate how important the issue is becoming)

Thanks in advance.