What Is GBS?

Eight months pregnant
Before Adam was born, I had never heard of Group B Strep or GBS.  Like many pregnant women in England, I firmly believed my midwives were telling me everything I needed to know about pregnancy and the complications that could arise from it.  I also believed I was being tested for everything that could go wrong and that if anything, the NHS were actually testing me for too much and focusing on pregnancy as illness rather than pregnancy as a natural event.  Unfortunately, I learned all too soon - and nearly tragically - that these assumptions were wrong.

Since Adam was born and survived a GBS infection, I have learned from the Group B Strep Support Charity that, "GBS is the UK's most common cause of life-threatening infection in newborn babies.  Without preventative medicine, 700 babies a year will develop GBS infections.  Most recover fully but around 75 will die and another 40 survivors will be left with problems." (http://www.gbss.org.uk)


Adam in his second week,
after the ventilator had
been removed
When I hear the word "strep", I think of strep throat and it doesn't sound very serious to me.  But Group B Strep is very serious indeed.  It is caused by a bacteria that lives naturally in the gut; for adults there are no symptoms of the bacteria and for adults it rarely causes problems.  But for newborn babies, GBS is potentially life-threatening.  Up to a third of men and women naturally carry the GBS bacteria and up to a quarter of women of child-bearing age carry it in the vagina at any one time.  It can be transmitted to an infant around childbirth and in a few cases causing premature birth or stillbirth.  

As the GBSS charity says on their website, most survivors of infections recover fully, but a percentage are left with "problems".  In Adam's case, those problems appear to be significant hearing impairment called dyssynchrony and visual impairment in the form of nystagmus.  He is also autistic and now attends a school for children with severe and profound special needs.  It could have been much worse as we were warned that Adam could have been left with brain damage, paralysis, amputations, epilepsy, deafness, blindness, cerebral palsy...the list goes on.

GBS infections are most common in the first 48 hours after birth (Early Onset Infection) but can occur up to the age of three months (Late Onset Infection).  Often, a GBS infection is coupled with Meningitis and/or Septicaemia.  Many babies are immune to GBS but some are not and there is currently no way of finding out whether a baby in the womb is susceptible or immune.  There is however an easy and affordable way to test for the presence of GBS using a simple swab test between 35-37 weeks of pregnancy that is readily available from a number of private labs in the UK for around £35.00.  

GBS colonization can come and go during pregnancy however the results of this test remain accurate for around five weeks; this is why the test is administered late in pregnancy as a woman is close to delivery but there still remains time to arrange for treatment where necessary.  It is also important to know that every pregnancy and every baby is different.  This means that just because a woman has had one healthy pregnancy and delivery, this doesn't mean future babies will be safe from GBS.  Every pregnant woman, in every pregnancy, needs to be tested to make sure their baby can be protected.  If GBS is found then penicillin (or another antibiotic for those allergic to pencillin) can be administered intravenously during labour.  These antibiotics offer excellent protection against GBS infections.

The NHS have currently decided not to administer the GBS swab test as a routine part of the pre-natal care for pregnant women, choosing instead to adopt a "risk-based approach".  The logic goes that many more women will carry the bacteria than will have babies who are susceptible to it, so to prevent overuse of and potential allergic reactions to antibiotics, it is better and more cost effective not to test in the first place.  Despite this, NICE guidelines do say that if GBS happens to be found while performing other tests during pre-natal care, then it must be treated.  To me, this seems a highly illogical contradiction - if it has to be treated when found, then it's important enough for testing to be routine.

In the pre-natal book pregnant women are given by their midwives, GBS is mentioned but the summary is so small that despite looking through this book while pregnant, I never noticed it.  The NHS direct website says as part of it's comment on GBS:  "Group B streptococcus (GBS, or group B strep) is a bacterium carried by up to 30% of people but causes no harm or symptoms. In women it's found in the intestine and vagina and causes no problem in most pregnancies. In a small number of pregnancies, it infects the baby, usually just before or during labour, leading to serious illness." None of the midwives or doctors I met during my pregnancy ever mentioned GBS to me and so I was blissfully unaware until it was too late.


Still in a coma and constantly "shivering"
from extreme illness
Once Adam was born and admitted to Neonatal Intensive Care fighting for his life against a GBS infection, his doctors told me that at my local hospital, on average 5,000 women give birth per year, of those around 2,000 will be GBS carriers but only 2-3 babies per year will actually contract the infection.  The problem is that the NHS have decided to play what in my opinion amounts to Russian Roulette with the lives of babies - most don't get it so that makes it o.k. not to test.  But my baby was one of the ones who got it, and for all those parents like us whose children have been infected, have died or have been left with permanent disabilities, we cannot comprehend why the NHS do not join many other countries - including Canada, America, Australia, New Zealand, France and Germany and others - in testing for GBS during pregnancy.  In America, instances of GBS infection have fallen by over 80% since routine testing was introduced.

Before I continue, please allow me to make one thing absolutely clear.  The care we received at Royal Shrewsbury Hospital once Adam was sick was extraordinary and I cannot and would not fault it in any way.  As I have said numerous times on this blog, the nurses and doctors were amazing and we are eternally grateful to them for what they did for us and for Adam.  He would not be alive today without their expert care and their knowledge of how to treat GBS and Meningitis.

But the fact remains that Adam didn't need to get sick in the first place.  GBS is preventable - easily, simply and safely.  I firmly believe this guidance needs to change and routine testing must be introduced in the UK urgently.  At the very least, women need to be properly informed of what GBS is and what the risks are to allow them to make their own decisions on whether to buy a private test.  But if we don't know about it, we don't have the power to choose.  

The tragedy is that GBS infections are rising, year on year and so this means more children are needlessly dying or left disabled as a result.  The even more tragic irony is that research has suggested that introducing routine testing would actually save the NHS over £27,000,000 per year.  This is because the money invested in testing is entirely balanced out by the money that would not need to be invested in the intensive care given to babies infected by GBS or the ongoing medical support and disability benefits for survivors who are left with problems.

So I have two requests:  

First of all, please visit the website of Group B Strep Support to learn everything you can about GBS; if you know anyone who is pregnant please tell them about GBS and encourage them to buy a private test.  Group B Strep Support:  http://gbss.org.uk/



Secondly, GBSS have a petition on the Downing Street website asking the UK government to work with NICE and the NHS to introduce routine GBS testing.  If this petition gains over 100,000 signatures then the issue must be debated in the House of Commons.  Please, sign this petition and encourage everyone you know to do the same.  Write to your MP and ask them to support the cause and to sign the petition themselves.  Preventing Group B Strep Infection In Newborn Babies:  https://petition.parliament.uk/petitions/111145 and there is another on Change.Org

You might just save lives by doing so!

8 comments:

  1. I have signed this petition, because i think things should change, no one shouldhave to go through this.

    ReplyDelete
  2. Thank you Premmy Mum, I really appreciate you doing that. Every new signature is, I hope, one more step to convincing the Government and the NHS to introduce routine testing for this horrible and yet easily preventable infection.

    Would you be willing to share this petition with your friends and ask them to sign also? I would be truly grateful.

    ReplyDelete
  3. i am sorry you had to go through all that.
    I have said since losing our first son to GBS at 10 days old that routine testing would be cheaper for the NHS than all the treatment it takes. Save a lot of heartache too.

    ReplyDelete
  4. Thank you for your kind comment and I'm also incredibly sorry to learn of the death of your son. GBS is a horrible infection and one I very much hope the NHS start working to prevent soon!

    ReplyDelete
  5. Hi there. im so touched by adams story and so pleased that he is still with you after beinng so poorly. i hav come across this as i am frantically searching for info on whether or not gbs can cause other future illnesses after a child has had this at birth. my son was very pooly when born and i was later told that he had group b strep!!?? he is now 4yrs, bless him, and has some health issues. could somebody pls help me by letting me know is gbs causes future probs. Thanku. Zeela. email - mianyaser@hotmail.com

    ReplyDelete
  6. Hi Zeela,

    I'm so sorry to learn your son had a GBS infection but so glad he is still with you. Yes, indeed GBS can result in a host of medical complications that can be lifelong - many children recover well but some do have lasting problems. Adam is hearing impaired and visually impaired as a result. Your best bet for really solid information is to contact Group B Strep Support (GBSS) as they are the experts on GBS and incredibly helpful. You can visit their website at www.gbss.org.uk to find all their contact details or they are listed above on this post.

    ReplyDelete
  7. Philippa Herbert28 April 2016 at 20:50

    Have signed the Change.org petition, but looks like the Government one has closed. I am shocked that parents do not know the risks and are delivering babies without being informed about GBS! Thank you for sharing your experience, Charlotte!

    ReplyDelete
    Replies
    1. Thank you Philippa, the petitions on the government site are only active for around three months or so. As such, every time one closes, we start a new one. The most recent one just closed a few days ago so I'm sure a new one will be up soon!

      Delete

Please, feel free to share your thoughts or reactions to this post. Comments are very welcome!