With the London Marathon taking place this weekend, so many people will be running to raise money and awareness for causes close to their heart.
One Leicester woman has turned her own personal trauma into a journey for change. 1 in 4 women carry group B strep, but it only becomes a risk when a woman gives birth. It is the most common cause for life threatening infections in babies, yet routine testing isn’t offered during pregnancy, like it is in countries such as USA, Australia and France.
Having almost lost her baby during childbirth, as well as almost losing her own life due to the infection, Preya Vaja is hoping to raise awareness amongst expectant mothers to be aware of group B strep and to seek out information or a test if they feel want to.
You’re running the marathon to raise awareness of Group B Strep Support, what is the campaign and what do people need to be aware of?
Group B Strep Support are an amazing small charity that work to stop group B strep infections in babies. It was founded by one of the most inspiring women I know, Jane Plumb who sadly lost her son Theo to a GBS infection in 1996.
Group B Strep (GBS) is the most common cause of life threatening infections like sepsis, meningitis and pneumonia in new born babies. Most group B strep infections are preventable if you know you’re a carrier.
1 in 4 women carry group B strep but it only becomes a risk when a woman gives birth. You’ll be given anti-biotics if you test positive. In the UK we don’t get tested for group B strep as part of our antenatal care, most high income countries offer routine testing like the USA, Australia, France, Germany etc. If the NHS can’t screen due to the costs their should be information given to women advising on where they can get the tests done privately.
As cliched as it sounds, I’ve been on a rollercoaster of a journey both physically and mentally rediscovery me, completing the London marathon means so much to me on so many levels, most importantly raising awareness and funds for GBSS but on a personal level proving to myself how far I have come from the person who was at her lowest point and couldn’t leave her house once upon a time a few years ago.
This is a personal journey for you, having suffered during childbirth due to the lack of testing. What have you learnt since then and what would you say to other mothers who may face something similar?
Trigger warning:
It’s been such an emotional journey for me. My youngest daughter, you’ll be happy to hear, is thriving. Like many three olds she’s cheeky and loves to play with her big sister. I’m a changed woman in a positive way, you don’t realise how much fight you have in you following dark times, as you don’t have a choice. I feel so lucky to be in a place where I can campaign and share my own experience as for many it’s understandably too raw and difficult to talk about very personal stories like this. As a second-time mum who had a horrific high-risk pregnancy where I was in and out of hospital during the time of covid in a national lockdown, I didn’t think my health and birth could get any worse, and it did. My daughter nearly died from a group b strep infection, she was born not breathing so rushed to NICU after trying to resuscitate her numerous times. She had to have very evasive procedures like lumbar punctures and spent time in NICU. I also was very poorly with maternal sepsis so it was a traumatic time for the whole family as my husband nearly lost his wife and youngest daughter all in one night. I am one of the fortunate ones who survived thanks to the amazing team who saved us that night, so very grateful to the wonderful NHS. This period and shortly following was one of the most lonely, isolating times of my life as I grieved the moments most mums crave, newborn cuddles, being conscious and present for her birth, and that first year of bonding with my daughter as I was so mentally broken and in survival mode.
I’ve learnt a lot about group b strep since, as I needed answers to a lot of questions. I didn’t feel the information I was given was enough for me personally, I was given a leaflet on group b strep as I left hospital. I reached out to the charity and educated myself so much. I learnt Asian and Black women are at higher risk of developing GBS infections, for me it was information I would love to have known about especially as I am Asian.
The mental health side of things are awful too and not talked about. Mothers suffer in silence. I didn’t see my family and friends due to isolating myself. I really struggled with PTSD and PND, so learnt that more needs to be done to normalise conversations around maternal mental health and the dark sides of it. I didn’t even know we had access to amazing care through the NHS like perinatal mental health services for mums like me until I was admitted into the services with my second daughter. We also have mother and baby units across the country where mums can get admitted for more severe mental health needs.
Hindsight has taught me so much. I’d tell any mothers to be to get tested, even if you’re already a mum! Know if you test positive, you’re entitled to receive antibiotics during labour or if your waters break early with no sign of labour. If like me your child goes on to have a group b strep infection and left with conditions or symptoms you need advice on reach out to the charities like GBSS for support and education as I feel they are so well informed. I would also say don’t be afraid to get support for your mental health as the trauma, grief and sadness you may go through is real and you absolutely deserve to be be heard and not suffer in silence, there are brilliant charities and support through the NHS out there.
I have turned this trauma into something positive by campaigning and driving awareness.
Leicester is part of the Group B testing trial, what does this mean locally and why should people be aware?
Yes, Leicester is part of the national GBS3 Trial, the trial is being conducted across 71 hospitals and comes to an end at the end of April with the results being available in 2025. The trial will compare the effectiveness of the UKs current risk based approach with two different testing strategies. I can’t wait to see the results as it may mean we see national rollout of the testing in pregnant women in the very near future which ultimately means less babies contracting GBS infections and improvement in pregnancy care.
Given that Group B Strep is the UK’s most common cause of life-threatening infection in newborn babies, why is there so little awareness around it and why is testing not routine?
I really have no idea why there is such little awareness, it is rare and only goes on to affect a minority. But the minorities matter!! I’m all for being informed and making the choice that is best for you. I completely understand the pressure midwives are under to deliver so much information to women but this is where charities like GBSS can support with literature they produce that can be given to mums to be as part of antenatal care.
The reason it’s not tested is because most of the time your baby will be born safely, but that leaves you with minorities like myself who go on to birth babies who do have GBS infections. It’s also a controversial topic as your result can change throughout your pregnancy which can make the screening inaccurate to predict, but the charity recommend testing 5 weeks before you’re due as it’s unlikely to change during this time, knowing you’re positive would give me piece of mind knowing I can ask for antibiotics, if you test negative you know there may still be a slim chance you could contract it.
Research also suggests screening does prevent some of these life threatening infections which is what the GBS3 Trial will conclude. Private tests are available and cost very little, what I wouldn’t give to go back and have a test! GBSS campaign to drive awareness and to stop babies dying from GBS infections or being left with life changing conditions caused by GBS. Key take away if you’re pregnant is order a private test or ask your midwife be mindful they won’t all be as knowledgable about this, there’s plenty of support and advice on the charity’s website.
What do you hope to see happen in the future with regard to GBS?
I would love to live in a world, where preventable infections are not happening. If you know your newborn baby was born with meningitis, sepsis or pneumonia, question if it could have been caused by GBS. Some will go on to have life changing conditions like cerebral palsy or developmental delays and parents need to be better informed by health care professional who are expert in this subject matter. I would also love to live in a world where there is a vaccine that women can opt in to take if they want, it will prevent GBS infections including preventing preterm labour and still births caused by GBS infection in the mother and late onset GBS in the baby.
Lastly regardless of what has caused your difficult birth, I would like to see more women getting supported for their mental health needs following what can be very traumatic births. Society really idealises the arrival of a baby and for some lit’s not always the case one of the most darkest moments, not every bonds with their baby straight the way because of their trauma!
How will the money you raise help and support the campaign?
In so many ways, the charity supports families suffering from the devastating consequences of GBS infection. The charity provides much needed expert support for health care professionals like midwives, GBSS are also the main provider of patient information on group B step in the UK and attend training days to talk with HCP involved in the maternity services. There’s also a lot of campaigning and research the charity under takes that makes a huge difference like campaigning to introduce a national screening programme and the development of a vaccine.
You can support Preya’s fundraising for Group B Strep Support on her London Marathon fundraising page.
You can find out more about Group B Strep Support via their website.
