Why isn't the NHS testing for Group Strep B?

Why isn’t the NHS testing for Group B Strep?

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Anna Wharton is mum to Gracie, a thriving two-year old, yet her daughter’s start to life – wired up in intensive care fighting Group B Streptococcus – was far from rosy. Read Anna’s story…

For the first week of my daughter’s life, it wasn’t me who cared for her, it was a team of nurses in blue scrubs.

It wasn’t my breast that she nuzzled into during her first 24 hours, but a feeding tube that went down her nose to deliver the colostrum I’d painstakingly pumped by hand.

Wires all over my newborn made getting her out of her incubator a two-man job. And instead of my voice to soothe her, it was the constant beeping and whirring of heart monitors on the neo-natal intensive care unit.

It was the most awful start to life, and one that was the complete opposite of what I’d hoped for my baby daughter.

And yet, I can’t help thinking that maybe I could have prevented it.

You see, when Gracie was born, a swab picked up that she was suffering from Group B Streptococcus (GBS). You probably haven’t even heard of it, but it is the biggest killer of newborn babies in the UK.

And yet, we do not currently test for it on the NHS.

As a newspaper executive it was my job to read every single newspaper, every single day, so I was aware of it. I read the frightening headlines, and researched all the facts.

It is a bacteria that we all carry day-to-day, it lives between the anus and the vagina and it is perfectly harmless. That is unless you are about to give birth.

Because if you have that infection when your waters break – that protective barrier that prevents babies picking up harmful infections – your baby stands a big risk of contracting it. GBS is in fact the most common cause of severe infection in newborns, particularly in the first week after birth. Sadly, about one in ten of babies affected by it, dies.

There is no point in testing for it throughout pregnancy, because it comes and goes – you could have it one week and not the next. But there is a huge need to test for it in the last few weeks of pregnancy because it is actually very easily treatable. If you are found to be positive, all that is required is to be hooked up to IV antibiotics during labour. That way, your baby will be protected.

It doesn’t sound much of a sacrifice to make, does it? And because I knew about the risks of GBS, I went to the trouble of ordering a £35 test over the internet, to take and send off for results once I reached 37 weeks.

And yet I didn’t take it. Why? Because it would have meant I had to give birth in a hospital, hooked up to a drip, and I had my mind set on a home birth. So I saved myself the dilemma of wondering what to do if it came back positive and put it in the bin.

But as we all know, Mother Nature always has other ideas. I laboured at home for 40 hours, but when things got complicated, I was transferred to hospital. Gracie had a very bumpy ride into this world, and ended up on neo-natal intensive care. When her infection markers shot up the day after she was born, it was discovered that she did indeed have GBS.

Luckily, she was already on antibiotics as a precaution after her traumatic birth, and she got stronger every hour and day afterwards. But I had to ask myself that had I taken that test, would she have instead been snuggled up with me on the maternity ward? I guess we’ll never know.

I did everything right by reading up on GBS, because after all, information is power. But not if you twist and shape it into something that suits your own wants and needs. I thought giving birth at home was more important, and it turned out I was wrong.

So whatever birth you want, just be aware of GBS and act accordingly. Because all of us want a healthy baby safely delivered, and a £35 test might just help make that possible.

For more information about GBS go to www.gbss.org.uk.

Follow Anna on Twitter @whartonswords and visit baby specialist Kiddicare for all your hospital bag essentials from nappies to the car seat for that very first journey home.

22 Comments

  1. My wee Max went through the same thing and is now a thriving 3 year old but we do know how lucky we are. Im expecting baby no 2 in November and opting for an elective section to avoid it happening again xx

    lisa Neilson
    Reply
    • Thank you Lisa for sharing your story. Really appreciate it. Wow, baby number 2 in November – exciting times!

      Kiddicare
      Reply
  2. I had GBS with both my children. A random swab showed I had it with my 1st, so I had antibiotics during labour. After being told that I wouldn’t be tested with my 2nd pregnancy but I would automatically have the antibiotics during labour, the hospital wouldn’t give them to me (wasn’t their policy as not confirmed I had it, although a midwife told me the rest of hospitals in area do give antibiotics). Turned out by a swab after birth it was confirmed I had GBS. We were just so very lucky our son was unharmed. Its terrible that even hospitals seem to be unsure about the details of GBS.

    Dianne
    Reply
    • Thank you Dianne. That must have been a huge worry for you to learn that your hospital wouldn’t give you antibiotics. We’re so glad to hear your son was born healthy.

      Kiddicare
      Reply
  3. I’m 27 weeks & I have been tested early in my pregnancy & I have strep b I’ll be on antibiotics when I start labour it flashes red on my notes!

    Amanda Kennedy
    Reply
  4. After reading this I just ordered a free kit for home testing of Group B Strep. You do it between 35-37 weeks. I don’t think anyone wants to take a chance when it comes to their baby. You pay £35 to receive the results back via text message. I will definitely be passing this on to my pregnant friends! Better to be safe than sorry!

    Here’s the link I used: –

    http://www.groupbstreptest.co.uk/order-form/

    Jodie
    Reply
  5. I previously had strep b in a routine swab . I’m now 20 weeks pregnant had another swab wen I was 10 weeks found out I had strep g.

    Becki
    Reply
    • Thanks Becki. What is your hospital/midwife recommending? Will they give you antibiotics for the labour?

      Kiddicare
      Reply
  6. I didn’t know that the NHS do not test for it because I was tested for group b strep in my last 2 pregnancies dated 2001 & 2005. Which I ended up having it in 2001 and antibiotics were administered throughout my labour, though short it was, I had the antibiotics given to me 3 times during my labour. I was not hooked up to a drip. My child was born without complications and remains to be very healthy thank God. I am now 25 weeks pregnant and have been advised by my midwife to get tested for group b strep around 37 weeks. My Dr tested me for it when I was around 3-4 weeks pregnant which was when my pregnancy was established. Although my midwife said the test was a waste of time and they should know better. However, I have noticed the massive difference in healthcare (or lack thereof) this time around being pregnant. It’s quite appalling. For example, after establishing my pregnancy with my Dr, they were to notify the necessary department for them to contact me for a booking appointment ect…. 10 weeks later no sign of anything. I called the Dr’s and they said its nothing to do with them and that I should call the hospital. The hospital confirmed they have never heard of me and that they have no record of my pregnancy. So they had to request the information from my Dr. Therefore my 1st scan and my booking appointment happened when I was 17 weeks pregnant. If I had waited for my Dr to do what he was supposed to do then I’d still be waiting at 25 weeks. Another thing my midwife mentioned is that my Dr was supposed to give me pregnancy vitamins. Luckily I started taking them on my own after finding out I was pregnant. NHS do not care anymore or they do not have the funding to care these days.

    Anji Manroe
    Reply
    • Thanks Anji for sharing your story. Glad to hear you’ll be tested at 37 weeks but not so great to hear that your NHS experience hasn’t been so good this time round. We wish you all the very best with your pregnancy.

      Kiddicare
      Reply
  7. I agree NHS should test for strep B – 7 years ago it claimed our neice at only 2 weeks old.
    Awful situation for the family to have to witness and be a part of helpless and nothing they could do but watch in horror as it took her small little body!
    If only she’d have been tested – not saying it would have saved her but leaves behind a massive WHAT IF?

    Karen
    Reply
  8. I lost my first child to GBS at birth in 2004. My waters broke prematurely and I waited 18 hours with a ruptured membrane before I went into labour. By then it was too late for my baby. I had never heard of GBS before then and indeed did not find out why my baby died until two months later. I subsequently had two healthy children, having intravenous antibiotics through your labour with both. Even 11 years later, nothing can take away the pain of my loss. My son should be starting high school next week but he isn’t and it horrifies me that there is still no testing on the NHS and, worse still, no information given routinely to pregnant women about this deadly infection so they can make informed choices about whether to take a private test. I tell every pregnant woman I meet of the risks, but it should not be down to us. Women have the right to know what risks their babies face and make informed decisions about their care.

    Julie Morris
    Reply
    • Julie, thank you for sharing your heartwrenching story. We couldn’t agree more that a) women should be made aware of the risks and b) there should be routine testing that comes as standard at all hospitals across the UK. Wishing you and your lovely children the very best.

      Kiddicare
      Reply
  9. my little girl was born at 39+3 and was born with complications after 2 weeks in intensive care she was well enough to come home it wasn’t until she was 10 weeks old that I read an artical about group b strep and it sounded exactly like what happened to my baby but she was never tested for it in the hospital even though she was showing signs of infection we was just told it was an infection but couldn’t tell us what it was, not being able to hold my baby for the first 3 days of her life was heartbreaking and for the sake of £35 my baby girl is now 2 and is perfectly healthy in every way, if we are lucky enough to have another child I will be paying to have the test

    katy chambers
    Reply
    • Thank you Katy. Your story exactly mirrors Anna’s – we’re delighted to hear your little girl is thriving. Best wishes to you.

      Kiddicare
      Reply
  10. My little girl passed away to gbs at one week old on the 2nd of June I wish I was informed about gbs and that I could have bought a test myself to save my poor little angel all the suffering and pain its a vicious infection and I am currently fighting my hospital for it to be a routine test or to just inform.us mothers aboit gbs it makes me wonder what else don’t we know abput :(

    Anna Callaghan
    Reply
    • Anna thank you for sharing. Your story is just heartbreaking, please know we are thinking of you. Good news to hear you are campaigning for your hospital to make it a routine test, we’d very much like to hear how you get on. Best wishes to you.

      Kiddicare
      Reply
  11. I had twin boys in march! Unfortunately the first one born contracted strep b!!! It was the worst time ever. I had never heard of it, so was never tested! If I had only known maybe we wouldn’t of had to go through such a traumatic time!! Josh was 2 days old when it was picked up rushed to hospital where he had a a cardiac arrest! Unfortunately Joshua’s developed into menengitis. He’s been so poorly, he is now home but still having lots of tests and we are still unsure of his sight! This is a horrible infection, that should be tested for!!! Forget the money, I would have brought over and over again to prevent this!

    Jaime
    Reply
    • Thank you indeed Jaime for sharing your story. Get well soon little Josh. Here’s hoping his sight will be OK. All the very best to you and your family.

      Kiddicare
      Reply
  12. 5 years ago I went threw awful time ,
    I had lots of infections when I was pregnant
    Renel kindney infection , endless thrush I had
    No idear what strep b. was until the results
    Came back & the midwife told me I had strep !
    This was my 3rd pregnancy and never picked
    Up on the other two , I new this was going to be
    A rocky road my waters went at home so rang the hospital , but thay had no bed available
    Even tho the midwife told me it was very important to get in to Hosp ASAP when your waters brake , but the lady on the phone just said
    Try cope with the Paine at Hm take some paracetamol , with in a hour the Paine was intense and I new I needed to get their , has we got their I had to flights of stairs to get up , in a lot of Paine , I just had to run up as fast I could , I literary got threw the doors in a side room and gave birth ! Well that was when thay whisked my daughter of to special care for 5 days ! All threw the strep b virus I really think more people need to no about this , this was ment to be a very happy time of my life but no my baby was fighting a infection which if I got the antibiotic in time she wouldn’t have had to have such a awful start in life xx

    Stacey Kearney
    Reply
  13. My little girl was born with group b strep, i was only told just before they discharged us and was given a leaflet! I didnt realise how serious it was! if they would of tested for it when i was pregnant they wouldnt of had to do 2 lumber puncher (i think thats what it is called)
    i dread to think what would of happened if they would of discharged her, it was only when the doctor asked if i had any concerns i said yes her face is red roar and then they done blood tests!
    what symptoms have other babies had?

    michelle
    Reply

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