Strep B experience

[wobblymum]

I would have put this on another Strep B board but they're all so full I thought I should start my own.

I just wanted to share my experience of Strep B and ask, like many people seem to have done, why isn't more being done about it?

I'd only vaguely heard the words Strep B before I had my dd and I thought it was just something rare that I would have been told about by my mw if I needed to know. Then my waters broke and I went into hospital 2 hours after due to bad contractions, so it wasn't a long time in between or anything.

During the wait for the pushing stage, a mw asked if she could do a vaginal swab and I said ok. I was in too much pain to wonder what it was for, I just thought it was normal procedure. The labour and delivery went without a hitch and my baby was born on a Monday evening. The following Wednesday morning, no-one had mentioned anything being wrong and I was expecting to be discharged when the day shift started. Then I was told I wouldn't be because dd had bad jaundice so they were going to keep her in for observation. So I thought that was it and we'd go home a couple of days later.

Then on Thursday, a paediatrician (sp?) came round and said that I'd tested positive for Strep B. He took swabs from dd and then rushed off, like he expected me to know what it was all about. It took until Saturday morning for me to get a mw to realise that I needed some more information and that no-one had told me anything, by which time dd had had time to be on a light blanket, go through bad jaundice and get rid of it!

The mw finally got a paed to see me on Saturday afternoon when they told me what Strep B was and gave me a leaflet about it. Then they said dd's swab results had been positive, and they took blood, but as she seemed ok they'd let us go home on the Sunday and just have the mw keep an eye on her.

She'd been feeding badly since she was born (still is) so Saturday evening was no exception but at 11pm another paed came round and suddenly said that because she wasn't feeding well that probably meant she was taking a turn for the worse and so they were going to put her on antibiotics just in case and so we wouldn't be able to go home for a while.

Then it took ages to get any info and one paed said we'd be in for 2 days, one said 7 days and one said 10 days. In the end in was a 7 day course, I had 2 difficult weeks in hospital and got home 13 days after I went in.

The thing is, the hospital couldn't help the fact that she had jaundice and Strep B but they way we got treated left me feeling really unsupported;

1. We were hardly ever told anything and it always took at least a day for us to get someone to tell us the results of any tests, even though they might have been ready for a couple of days before.
   
   
2. Only one mw out of loads ever took the time to listen to my concerns, all the rest were just to busy and rushed off after just telling me that they'd ask someone else (they never did).
   
   
3. After the information I found out, I realised the antibiotics should have been started well before they were, which would have helped dd, and saved me a LOT of stress and depression.
   
   I met a couple of other mums in similar situations while I was there and it seems that hospitals just aren't prepared for dealing with parents of babies with Strep B. They may be very medically capable but that doesn't give you much comfort when no-one will listen to you or tell you anything. We've been home a week now and we're still trying to find out information that we need to know and should have been told long before now.
   
   Sorry if this seems like a long rant but I just can't believe the lack of information given about this very common and very deadly infection. More information should be given by mw's before labour, and more support should be given to parents who suddenly find themselves confronted with Strep B.

[Demented]

Hugs wobblymum, I'm definately for more info too. I carry Strep B and couldn't believe how illinformed the health profession are.

[catinthehat]

Hello Wobblymum - I knew absolutely nothing about it until I miscarried (nothing to do with Strep).

After the D&C, I had a letter from the registrar to warn me that I was a carrier. I then read everything possible on the internet, and was then primed to ask the midwife when I was pregnant again. She gave me the relevant leaflets.

The results for a baby can be ghastly (as you know). Hence, after that, at every check up,every time I went to the hospital, even when I moved from the ward to the delivery room, I emphasised I was GroupB strep and would require antibiotics in a drip before giving birth.

I made sure it was written in my notes and my birth plan and that dh was ready to remind staff in case anyone forgot. I didn't quite write it on my stomach in biro, but that wouldn't have been a bad idea.

My miscarriage gave my dd a lucky break in that I was forewarned and forearmed. In addition, I kept a working assumption that everyone dealing with me was forgetful/dumb/untrustworthy on Strep B.

Recommended website? Group B Strep Support (GBSS)

[butterflymum]

Hi Wobblymum

Thank you for sharing your story. The other thread

Strep B thread

is long, but for a good reason. It is trying to make people aware of stories like yours and why testing/treatment are so important. It is also trying to highlight the lack of knowledge of Strep B among mothers and indeed the health professionals. Indeed, only last week, a debate took place in Westminster Hall, Parliament about these needs. Some of the mums on that thread kindly supplied questions/thoughts etc which I forwarded to the MP involved in this campaign.

As catinthehat has suggested, if you have not yet visited the GBSS support website, then please do so. They can supply excellent literature which, although a bit late for you, can at least explain some more about what you experienced and give you a more fuller understanding of the work being done to bring about change.

What has happened to you is so frustrating (believe you me I understand this only too well having experienced similar problems).

That said, it now means that you are in an excellent position to help raise awareness among other mums and among the health professions. You have already taken a step in this direction by posting here.

Take care and please do remember the importance of reminding all nurses/doctors involved in any future maternity care of your Strep B status.

Mums have enough to go through during the birth without having these added worries after it - to echo what you have said here and what has already been said on the other thread, more needs to be done beforehand, during labour and afterwards.

[butterflymum]

Forgot to say,

Wobblymum, I hope your daughter is much better now and has no long term effects from her experience. Hope the feeding settles down too, if not, I am sure you will find heaps of advice/help on other threads. Please feel free to contact me via the option at top of page if you want to chat.