Strep B (new Thread from 17/3/04)

[butterflymum]

Hope people don't mind, but as there are now over 200 messages on the original, I thought a new thread would be useful. Here is a link to the original for anyone who would like to read same:

Original Strep B Thread

Also, as GBSS have a new campaign they are looking for support with, I herewith copy the most recent message:

Hello everyone.

I M P O R T A N T *

Jane Plumb of GBSS is looking for as many people as possible to help with another Strep B campaign. I thought some of you on this thread may be willing to help: The details are as follows (ie copied and pasted from her email:
***

"As you may know, the Government is seeking the opinions from people around the UK about all kinds of issues, including health and where Government money should be spent.

At GBSS we believe preventing preventable cases of GBS infection should be a priority, both through implementing a screening programme for all pregnant women and through increasing the knowledge and awareness of what should/could be done both amongst health professionals and expectant parents.

The Green Top Guideline on GBS published by the Royal College of Obstetricians & Gynaecologists (RCOG) last November is an enormous advance towards greater prevention - GBSS is very supportive of this guideline (indeed, GBSS has been advocating a similar risk-based approach for over 7 years!) . When fully implemented in the UK, this guideline will prevent the majority of lethal cases of GBS infection in newborn babies. The biggest difference between GBSS?s position & RCOG?s is that RCOG does not advocate routine tests for pregnant women for GBS colonisation and we do - medical evidence shows that even more GBS infections could be prevented through adopting a screening approach to GBS prevention, using reliable test methods, rather than just a risk-based approach. However, existing swabs are unreliable in that they give a falsely negative result up to 50% of the time when the result should be positive - reliable Enriched Culture Medium (ECM) tests exist but, at present, these are only available privately (and we only know of one laboratory which offers this reliable test - contact us for more information if you need it) and are not widely publicised.

GBSS is campaigning for reliable ECM tests for the diagnosis of GBS colonisation in pregnant women to be made available on the NHS. Would you like to help move this forward? If you would, then please visit www.bigconversation.org.uk/index.php?id=682 and in the box asking for your comments, paste in the following (assuming you agree with these statements of course!):

1 . Reliable enriched culture media screening tests for GBS during pregnancy should be made available on the NHS as a matter of urgency .
2. High quality information on preventing GBS infection in newborn babies should be made routinely available to all pregnant women and their health professionals

Doing this really will make a difference. And please forward this e-mail on to any of your family, friends or contacts who you think might like to support this campaign! The more people who highlight this as an issue, the more likely and the more quickly it will be addressed.

Please help if you can. Thank you."

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Phew, sorry that was long.

Thank you for taking the trouble to read this and, if you can help, an extra special 'Big thank you' from me too.

butterfly

Wonder if you can help me. When DD1 was born at 31 weeks, she was diagnosed with GBS, she was given meds but we didn't discover this till she was 2 yrs old (she has regular checkups as she has CP) I wasn't given any antibotics and DD2 was born at 33 weeks when DD1 was 15 months old. Could GBS have caused the premature births of both DDs? Is it possible that Dd1 had a different sort of GBS? She also had Septacimea (Sp??) which we also didn't discover till she was 13 months old, when she was diagnosed with CP.
IF we were to have another baby could I request a test based on the infomation that we have discobered over the years?

OMG! Just looked up GBS and came across this

In newborns, GBS is the most common cause of sepsis (infection of the blood) and meningitis (infection of the fluid and lining surrounding the brain) and is a frequent cause of newborn pneumonia. GBS disease is more common than other, better known, newborn problems such as rubella, congenital syphilis, and spina bifida. Some babies that survive, especially those who develop meningitis, may develop long-term medical problems, including hearing or vision loss, varying degrees of physical and learning disabilities, and cerebral palsy.

Guess I know the answer now

anyone??

mieow,

Only just noticed your post. I think it would be a great help to you (in understanding more about GBS and in planning for another baby) if you were to have a chat with Jane or one of her helpers at Group B Strep Support .

butterfly

hi just been on this thread as ifound out today that i have gbs i am 29 weeks pg and obviously worried sick , i had a slight bleed a week ago but the day beefore that i had pains in my side the y kept me in overnight but only for the fact of my bleed would they have not done aa swab , and detected it, then what? do you think mieow that your prem delivery was too do with this gbs.

Jolly4, just a reassurance. Once GBS has been diagnosed, you should be put on an IV drip during labour and potential problem is solved. Don't think GBS is linked to prem birth but am no expert. I was diagnosed with it and DD was born a week overdue. Had IV during labour and no probs. As fas as I'm aware problems are mainly due to lack of diagnosis and therefore baby at risk when "coming out".

i have just been reading in an american pg mag that they do the gbs test routinely in america at 35/ 37 weeks pregnant anyway thanks for puttin my mind at ease carowlers must admit i was a bit anxcious but feel bit better now

Wozzle

Congratulations! I am so pleased to hear that Freddie Charlie arrived safely I had been wondering how you got on. Hope you manage to win DH around to the idea of another.

Take care

Louli

hi all have just joined this site and am very interested in this discussion my son was stillborn through group b strepp nearly 13 years ago it was pretty unknown then as far as i know( so hospital told me at pm results not a life or death situation) reading all this now has opened my eyes a lot because i was not treated even though they knew i had it(angry). my next pregnancy i had it again and was treated with antib's for most of pg and had iv drip during labour but my son was prem and has hearing and learning and behavour problems along with asthmas end excema and i was just wondering if anyone had anymore info on any of these things thanks

lynneyk,

So sorry to hear about what happened to you and your children. Why not contact Jane or one of her helpers at Group B Strep Support , as there are others who have gone through what you have and who may be able to help you.

butterfly

Hi butterflymum. Thankyou so much for your post on my other thread. Did not realise this one existed! Have been in contact with GBSS and have become a member of the charity. They are an absolute wealth of info so thanks for pointing me in the right direction. Its good to know that something can be done to prevent this. Apparently a swab I had done at around 30 weeks had tested postitive for strep B and nothing was done, I wasnt even informed. Am angry about this as my ds ended up sick and on iv antibiotics for 10 days for something that should have been prevented. Still, am very grateful things turned out ok in the end. Thanks so much for your help. I see you are a bit of a campaigner in this issue. If there is ever anything I can do or help with please ask as I feel really strongly that this issue needs to be raised so that people can be aware of it. It could make such a difference in saving so many babies. Sorry to go on, but when you have been affected by this it is so infuriating when you seem to know more than the health professionals who are meant to be looking after you. (I shall step down off my soap box now!!) Thanks again

Hello everyone, hope you are all well.

Have not posted much on here for a while so thought I would give a quick update on a now (naughty) 11 month old!
I cant believe he is nearly a year. He had definately got his personality through. I say he has the attitude of his father!

I was in pregnancy & birth mag in January, did any of you see it? It was highligting Strep B and gave our story.
Lets hope it saves some lives!!!

TTFN!!!
Wozzle 1 (DRIB) xxx

Hi Wozzle (rather belated), I missed that article but have seen a previous one about you, so imagine this would have been equally as good and served to highlight the issues of GBS.

Good to hear that Freddie Charlie is well....hope he had a lovely birthday.

butterfly

Hello

In the past, many of you have asked how to help make others aware of the facts surrounding Group B Strep. Well, for the first time ever, Group B Strep Support Group plan to run a national Awareness Week campaign. This will run from Monday, 26 September to Sunday 2 October 2005.

How can you help? If you visit their site at Group B Strep Support you can click on the Red coloured 'Awareness Week' link in the menu. This will take you to a page with all the details and further links to download posters/forms.

I will post about this on a couple of the Pregnancy/Childbirth threads too, as I know some mums there may not read this thread. If you are seeing it for the 2nd/3rd time I apologise, but I want to encourage as many interested mums as possible to help.

Thanks for taking the time to read this...hopefully many of you will feel able to help in some small way.

butterfly

Hello to everyone just found the site whilst trying to find out more about GBS. My son was stillborn through GBS just 3 weeks ago, I had never heard of it never been told anything about it by my midwives and never given the choice to be tested. I have been in touch with GBSS and been told the test is just £28 I cant believe i wasnt given the choice and for just £28 things could have been so different. To read other peoples experiences has made me feel we are not alone which has helped alot. Would be grateful for any advice. Thankyou

Oh Rummie, I am so sorry to hear your sad news and hope you are coping well at the moment. It is good that you have been in touch with the charity as they are best placed to give you full support/help through this time.

Whilst it may not be any consolation at the moment, perhaps you will take some small comfort from knowing there are other mums (including at least one or two on mumsnet) who have had a loss at birth or soon after due to GBS, but have then gone on to have more children without any problem.

Sadly, as you have unfortunately yet again proved, GBS is still not receiving as much attention at the ant-natal care stage as probably it should.

To prevent your child's death being 'in vain', peraps you would feel that it was important to help re-educate the health professionals at your local hospital by providing them with all the available GBS Awareness literature (and indeed any of the existing literature they have available). This alone may help save someone else from going through what you are now.

Do post again if you want to talk further.

Be strong.

butterfly

Rummie, just wondered how you were coping?

Also, just want to remind people about the forthcoming awareness week.

I am sure GBSS would welcome support from any interested Mumsnetters as so many of you have already helped others in the past through this and other similar posts.

butterfly

Thankyou butterflymum for your kind words i am coping fine i think. I am thinking of trying for another baby some people will think it is far too soon probably but as i have endometriosis it took me 5 years to get pregnant after surgery and i just dont know if i ever will again. I will never forget my baby Arun and he will always have his place in my heart but as time goes on my endometriosis could come back and age is also creeping on. Everybody says time is a great healer but as yet it seems like a long time before i feel any less pain than the day i had my Arun. Sorry for going on like this it has just been a very bad day. Thankyou again .

rummie, do not worry about what others think...just do what you and your partner/husband feel is right and in your own timescale. Who can truly say what is too short and what is too long? Time is ever-changing and moving on...hopefully you can both now move on too and one day have another baby, not as a replacement for Arun, as that is not possible, but out of desire to express your continuing love for each other in a natural way. In doing so I have no doubt that your love for Arun will still remain strong in your heart.

General message

Awareness week is almost here and I have heard that Group B Strep Support has launched a petition calling for the Government to ensure sensitive testing for Group B Streptococcus carriage is routinely and freely available for all pregnant women in the UK and that relevant health professionals should be fully informed about GBS so they can advise expectant parents in their care.

I think this is excellent. Routinely and freely available testing and fully informed health professionals - what could be better.

If you agree, please sign their petition . Also, why not forward this link on to others who might be interested, the more signatures the better ! Please note, when signing this petition you must give your FULL address - Downing Street accepts e-petitions, but won't accept names with partial or no postal address.

It would be great if any interested mumsnetters felt able to support the issue/s in this way - I certainly intend adding my signature.

butterfly

bumping this as I just heard about the petition. Also a reminder that your full name and address has to be there for Downing Street to accept it.

Thanks for the bump, tatt. Signatures on the petition are well over the 2000 mark now but still room for plenty more (see link further down thread) .

For everyone interested, Awareness Week starts next Monday (26th September) so please watch out for articles in the press and on the TV and, if you can, why not help spread awareness to any pregnant mums you know in your own area.

butterfly

Awareness Week starts tomorrow (Monday 26th September)!

Watch out for stories in the press. Or, have a quick read about it on the BBC's health pages .

butterfly

hi, I am fairly new to mumsnet so I have only just found this site. My experience of Strep B can only be described as a lucky one compared to some of the tragic stories on the site. My son was born in April 99. I had previously had two early miscarriages before him and was told that it was natures way, and that there was no reason why I couldn't carry full term. He was born naturally, and we believed everything was absolutely fine. When he was 3weeks old he suddenly began screeming for no apparent reason, he was feeding relatively ok, just very unhappy. As the day went on he began to get a temperature (104) so I took him to see the duty doctor. He said that it was probably a viral infection, to not worry about his temperature as this can fluctuate so much in young babies. To leave him for 48 hours, unless there was any change. I spoke to the midwife in the afternoon and she arranged another apt with a different doctor. nothing had improved with my baby, so we went along. The lady doctor felt that as he was CURLED UP IN A BALL, he may have a kink in his bowel. She said that we could either take him to childrens outpatients that night, or leave him until the morning to see if there were any signs of improvement. She said "don't worry mrs* it is not a meningitis cry". It hadn't really entered my head as there was no signs of a rash, and inlaws had said "its probably colic". Being a new mum I was very naive. We took him to RHCH where the doctor firstly xrayed his tummy, felt there was nothing untoward that would explain his high temperature, and said they were going to do a lumberpuncture to rule out Meningitis. When they later told us to sit down, I believed with all my heart that I was about to loose my precious baby. He had Strep B Meningitis. Luckily we caught it just in time before the blood poisoning crept in, and had we have left him OVERNIGHT. or 48 HOURS* we would have lost him. He is now coming up for his 7th birthday, and although he has had many problems with his early development (has now been diagnosed Autistic) when we watch him playing with his little brother(or fighting as is more often the case) we are always so grateful that we were blessed to keep him with us as we know only too well, that things could so easily have been tragically worse. Heartfelt symapathies to every one who have been affected by Strep B, especially those that have not been as fortunate as we have.

Although it must have been very frightening at the time mixedemotions, it is good to see such a positive outcome in your case and wonderful that you now feel able to share the experience with others to help increase their awareness and understanding of the possible effects of Strep B.

Thankyou Butterfly mum.