GBSS Printed Newsletter January 2022

January 2022

GBSS News INSIDE Group B Strep Support at 25 3 Amazing Challenges 4 #TeamGBSS 10 Conferences 11

#GBSaware 1

Welcome I know not everyone had a great 2021, not least thanks to the ongoing global pandemic.

However, for the charity it was a productive year. Big moments included the charity publishing data on NHS hospitals failing to follow group B Strep guidelines, our successful GBS in Pregnancy and Babies conference, and refreshing the charity’s strategy for the next three years.

The team continues to go above and beyond the call of duty to offer information and support to families, doctors and midwives.

Although face-to-face events have not yet returned (hopefully this year), our virtual events have been brilliant and are, I suspect, here to stay.

I was also delighted to be awarded an honorary fellowship from the Royal College of Obstetricians and Gynaecologists (RCOG), given to me by RCOG President, Dr Edward Morris (pictured). These are given to those who demonstrate the highest level of support to women’s healthcare services.

This award recognises both my work and, through me, the charity’s.

Looking forward, our virtual conference on 12-13 July will be an unmissable mix of the latest research, practical clinical guidance on GBS and families’ stories – do join us.

Till next time,

Jane Plumb MBE FRCOG FRSA Chief Executive

Front cover image: baby Arthur Arthur’s mum Marketa lives in Czech Republic. She was routinely tested for group B Strep in the last 5 weeks of her pregnancy and little Arthur was born safe and sound. “I can’t understand why the UK doesn’t routinely test mums for GBS.” Marketa told us.

WHAT IS GROUP B STREP?

GROUP B STREP SUPPORT

Group B Strep (Strep B or GBS) is a common bacterium carried in the lower intestines and/or vagina of one in four women. Usually harmless with no symptoms to the carrier, if passed to a baby around birth it can cause serious infection.

The world's leading charity working to stop group B Strep infections in babies.

Although most babies exposed to GBS do not develop infection, GBS is the leading cause of life-threatening infections in newborns.

Most GBS infections are early-onset (first 6 days), a third are late-onset (7-90 days). Most early-onset GBS infections can be prevented by women carrying the bacteria having IV antibiotics in labour.

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We provide information on GBS to families and health professionals We support affected families We want every pregnant woman to receive: • information on GBS during routine antenatal care • Information on a GBS-specific test late in pregnancy

Group B Strep Support at 25 The end of 2021 saw the charity turn 25.

Twenty-six years ago, Jane Plumb and her husband, Robert, set up the charity after their middle child, Theo, died aged just 17 and a half hours from group B Strep infection.

This dreadful time was made worse by there being no information available for them. When they found out most of these awful infections were preventable, it made them determined to stop it from happening to others. 25 years on, there's still more to do.

Zara's story In January 2021, Zara felt blessed to find out they were expecting their second rainbow baby. As her firstborn, Fern, was stillborn in 2016, Zara was closely monitored throughout her pregnancy and offered various tests, but not once was group B Strep mentioned.

Zara told us: “5 hours after birth, Eira started grunting and struggling to breathe and the crash team was called. It felt like all our fears were coming true and we were once again going to lay to rest another child. I remember pleading with the consultant not to let my daughter die.

After a few days, we received the results – they confirmed she had group B Strep infection.

I knew nothing about group B Strep and blamed myself. Despite all the tests I had during my pregnancy due to my previous loss, GBS was never mentioned. A simple test could have saved my daughter all this suffering.”

Eira survived and you can read her full story here: gbss.org.uk/stories/eira/ Until all pregnant women are informed about group B Strep and offered testing as part of routine antenatal care, we will continue to work to make all parents know that testing is available privately.

You can help mums like Zara ensure their babies don't have to suffer needlessly at the hands of GBS infection by making a donation online at gbss.org.uk/donate or by phone on 0330 120 0795.

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Amazing Challenges

Everyone here at Group B Strep Support was blown away by the passion, hard work and dedication that all our supporters put into their challenge.

Last July, over 1000 participants took on our 3000 squats Facebook challenge and November saw 580 supporters clock up the steps by walking, running, and jogging the distance of 300,000 Steps in the month.

We are pleased to announce that a fantastic total of £50,000 has been raised to date.

Becki Becki was excited to find the 3000 squats in July Facebook challenge – At 25 days old her little boy, Henry, was rushed to A&E where he was treated for suspected group B Strep sepsis and meningitis.

Becki told us “It was horrific, and all this was during the first lockdown, so I had to face this all alone as his daddy wasn’t allowed in.

Thankfully, Henry made a full recovery. I’m passionate about raising awareness with all my pregnant friends and encourage them to talk to their midwives about group B Strep. Henry was my third child and I had never heard of group B Strep or been told about the symptoms to look out for. I am so grateful for our NHS and the care and treatment our baby received.”

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3000 SQUATS IN JULY

Congratulations to everyone who took part and to your friends and family who supported you through this challenge.

We were truly grateful for what they achieved and the gift that they gave.

Right now, someone is getting the support and information they need, and this is because of the funds and awareness our amazing fundraisers raised.

Here are just some of our supporters who shared their stories with us.

300,000 Steps in November

Anna “I was shocked but felt incredibly lucky that I found out at 36 weeks' pregnant I was positive for GBS. As soon as my labour started I was put on IV antibiotics every 4 hours until my baby girl announced her very loud arrival. She was then monitored every two hours and luckily she was absolutely fine and I could take her home the next day. Thanks to the midwives at Wexham Park Hospital for looking after us and to Group B Strep Support for helping me to find answers to all my questions when I was pregnant.”

Lucy When Xander was born, he was rushed to NICU. He had sepsis and group B Strep was confirmed to be the cause. During his stay in the neonatal unit, Xander had seizures and a brain haemorrhage.

Lucy said: “It was a hugely traumatic experience and yet we are the lucky ones as Xander made a full recovery. I had never even heard of group B Strep.

This challenge has been a brilliant way for me to do something positive and fun. Our local school community in particular was very supportive and interested to learn. Until the magical day that a vaccine is introduced, we must continue to do all we can to raise awareness and encourage testing.”

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Continued

300,000 Steps in November

Anca

300,000 Steps in November

“I first found out about group B Strep when looking on Facebook after putting my 5 month old down for a sleep. I had never heard of it. It was when I started reading the stories and the comments of the those affected by it, I hugged my baby and decided to join the challenge to help as much as I could.

I shared pictures and information on my news feed to try and raise as much awareness as possible. The steps for me were an added bonus to help me get more active after pregnancy. It wasn’t easy, but I was pleased to be able to do my bit for the charity.”

Iwan Thomas completes 100 mile run of his life Last June, Olympic and Commonwealth Games sprinter, Iwan Thomas, completed the South Downs Way Centurion 100 mile non-stop race from Winchester to Eastbourne. It followed months of tough training – and some injuries!

For Iwan this was a run with a difference.

In 2018 Iwan got a call from the hospital soon after his son Teddy was born, telling him Teddy was sick and in intensive care, “I later learned he’d got group B Strep infection, something I’d never heard of before. Thankfully after an agonising 10 days in hospital, Teddy pulled through and came home with us.”

It’s been an incredibly emotional journey for Iwan, and we couldn’t be prouder of him. His training and final race has formed a powerful and moving documentary: youtube.com/ watch?v=J1BRUQmH0CQ 6

He also appeared on BBC Breakfast to help raise awareness. Iwan has raised over £25,000 for the charity to help families less fortunate than his. He is truly a GBSS hero. justgiving.com/gbssiwanthomas

Baby Phoebe’s story Laura was never told about group B Strep in pregnancy.

Four hours after daughter Phoebe’s birth, Laura noticed, “She was unsettled, wind/cholic-like and lethargic... ...Phoebe then stopped taking the boob and her bottle. She was so cold, she looked mottled and didn’t even wake or cry when bathed. She was constantly holding her hands to her head as if she was in pain.

It took her 7 days to open her eyes after antibiotics were administered. 2 weeks later, we were given the dreaded news - she had barely any brain function. She would never walk, never

Proud to partner Group B Strep Support Our lawyers have been successfully securing settlements for clients and campaigning for access to justice and patient safety for over 30 years.

If your child has been affected by Group B Strep through medical negligence, please contact Emmalene Bushnell on: ebushnell@leighday.co.uk +44 (0)20 7650 1200 leighday.co.uk @LeighDay_Law

talk. She was registered blind. She could feed from a bottle and that was it.”

Phoebe died in November 2020 due to brain damage and further complications following early-onset GBS sepsis and meningitis in 2018.

“She never got the life she deserved or the one we dreamt for her.”

George George’s mum Katy writes, “I was a first-time mum dealing with this alone.

Fortunately, my room was located on the ground floor and had a window, so my husband Carl was able to sneak over to support me through those dark moments. All I wanted was to be held.

Nothing can prepare you for hearing the words sepsis, meningitis, or pneumonia in the same sentence as your baby.”

George has recovered from his group B Strep sepsis.

Ruby Ruby’s mum Leah writes, “Ruby was my long-awaited rainbow baby. At 17 weeks Ruby was rushed into hospital with a high temperature and a very fast heart rate.

I could hear her screams down the corridor. The next day we were informed Ruby had contracted late-onset group B Strep infection, which had spread to her blood causing sepsis.

Those next few days in hospital were awful. Due to the pandemic, I was alone, helpless.

Your donation can make a difference.

To help us support families like George‘s and Ruby‘s, please donate at: gbss.org.uk/donate 8

After 14 days-worth of antibiotics, Ruby made a full recovery, and has no long-term effects.”

Jasper Jasper’s mum Frankie writes, Frankie’s midwife agreed to test her using an ECM test. She told us, “I was scheduled to be induced at 37 weeks, however my test came back positive.

I was told on 30th July to get to hospital to be induced early.

Jasper was born at 5lbs 10 on 31st July. I am one of the lucky ones. He was treated for group B Strep and didn’t contract GBS infection. He’s now a happy and healthy boy.

Your awareness saves lives.

Thank you.”

Leo Leo’s mum Maria writes, “I had heard of group B Strep infection and had even read up on the symptoms, but when it was happening to us it all seemed to go out of the window… …within a few hours we noticed he was quite whiny and unsettled. We raised the alarm when the midwife came in and she was great – we probably owe his life to her…. he looked nothing like the healthy baby who had been born just 12 hours earlier. We thought he was going to die.”

Willing to share your family‘s experience of GBS? Your story matters.

Please email us at: info@gbss.org.uk.

After receiving antibiotics, Leo recovered from GBS sepsis.

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#TeamGBSS took on the London Marathon 2021 On Sunday 3rd October 2021 #TeamGBSS runners took to the streets of London, completing the famous London Marathon, after 18 long months of waiting.

On a bright sunny day, Matt, Hannah, Craig, Milan, Rob and Will all set off on their 26.2 miles each with their own personal story about why they wanted to run for Group B Strep Support.

They did us proud! Collectively, this incredible team have raised over £7000 and are proud to now call themselves Marathon runners!

Nyah ran the London mini marathon on Sunday 3rd October with 300 other children from the London boroughs.

She chose to run for GBSS because last year her baby sister Miah contracted late-onset group B Strep infection at 7 days old. Nyah told us “I’d wanted to raise money for GBSS so they can continue to raise awareness of group B Strep infection and support families like mine.”

Nyah has raised £830 for Group B Strep Support.

Emma and Rory Climb Mount Errigal

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Emma told us “Myself & my husband Rory climbed Mount Errigal, Co. Donegal to raise funds for GBSS and the neonatal unit that looked after my son when he was ill. It was certainly a challenge and what a great experience! It really has made a difference as I know women, because of reading our story, who got tested, got a positive result and received antibiotics in labour. All babies were born healthy!” Emma and Rory raised £1550.

Group B Strep Conferences Our June 2021 virtual conference was a great success, with over 350 attendees.

Highlights included a presentation from Dr Carol J Baker, ‘the godmother of group B Strep prevention’, a trailblazer in GBS research for over 30 years. Our next conference will be held on 12-13 July 2022 gbss.org.uk/professional-resources/ gbssconference2022/ We were honoured to help organise and run the second global conference on GBS (ISSAD) in November 2021. At this, the World Health Organisation launched their report on the

potential value of a GBS vaccine, which not only would save lives, but also save between $1 billion and $18 billion globally gbss.org. uk/latest-news/urgent-need-for-vaccineto-prevent-deadly-group-b-strep/

GBS3 Trial The GBS3 Trial is working to establish the best approach to prevent early-onset group B Strep infection for the UK. The trial currently has over 20 of the 80 hospitals needed to take part.

The results, expected mid-2024, will provide evidence for the next review of the UK’s national policy on screening for GBS. Read more at gbss.org.uk/gbs3

Information on GBS in 15 languages Our “Group B Streptococcus in Pregnancy & Newborn Babies” leaflet, cowritten with the Royal College of Obstetricians and Gynaecologists has now been translated from English into 14 other languages. Our thanks to The National Lottery Community Fund for making this possible.

Visit gbss.org.uk/professional-resources/ free-resources/gbs-information-in-yourown-language/ Clinical Governance Midwife, Selina Dubison, Homerton University Hospital, told us, “Homerton Hospital serves such a diverse community. We see many women who speak Hebrew, Polish, Bengali, Romanian to name

a few. Having the GBS leaflets in all these languages is brilliant. They will be able to read all the information in their own languages and we can make sure they are fully educated and can make an informed decision surrounding GBS.” Selina and her team held an Awareness Week at the hospital, raising awareness plus a wonderful £262 for GBSS. 11

These smiles hide heartbreak.

Anna: “If I’d known about group B Strep, we wouldn‘t have had to go through what we did.“ Group B Strep is the leading cause of life-threatening infections in newborn babies.

If you would like to get involved please visit gbss.org.uk/get-involved

If you’d prefer not to receive our newsletters, please email info@gbss.org.uk, call 0330 120 0795 or write to us at GBSS PO Box 203, Haywards Heath, West Sussex, RH16 1GF Registered charity number: 1112065

Registered company number: 5587535

Photography by: Baby Art Studios Reading

Mum Anna and baby Minnie were seriously ill with group B Strep sepsis after Minnie‘s birth. Both are now fighting fit, but it was touch and go for a while.