|Eight months pregnant|
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
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
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!