GBSS Printed Newsletter July 2022

July 2022

GBSS News #EndGBSinfection Campaign

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Family stories

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Inspirational fundraisers 10 GBS Conference 15

Arthur

#GBSaware

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Welcome There has been so much going on since our last newsletter: An amazing 120 of you took part in our Walk 100k in March challenge (p10), raising a fantastic £21,000 towards our vital work.

April saw the launch of our #EndGBSInfection campaign (p3) to get more hospitals involved in the GBS3 trial, and coverage from Sky News and other news outlets. 3,700 of you wrote to your MP to ask them to get your local hospital involved. This is making a difference - hospitals are engaging with the GBS3 trial team because of your emails.

July’s Group B Strep Awareness Month saw the launch of our #BumpItOn campaign, asking everyone to tell pregnant women about group B Strep. Big thanks to everyone for raising vital awareness of group B Strep.

In July we held our virtual conference for health professionals (p15) where we announced that Dr Carol J Baker (a personal hero of mine) is taking an advisory role with the charity.

Arthur

That's a whistle-top tour of some of the things we've been doing on top of our usual work of providing information improving

knowledge, campaigning for improvements to prevention and care, and supporting research into GBS. We couldn’t do this without you – thank you for your ongoing support. It makes a huge difference.

As I write, we’re recovering from a heatwave, so I’ll end by wishing you well, and hoping that you keep cool.

With best wishes,

Jane Plumb MBE FRCOG FRSA Chief Executive

Front cover image: Lily Mum Kerry told us “I had heard someone talking about group B Strep on one of the morning shows, so when I fell pregnant, I knew I wanted to be tested. I tested negative and Lily was fine, but I cannot understand why it's not just a routine test that is done when it could save babies' lives.”

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

#EndGBSinfection Campaign Launch In April, we launched our new campaign #EndGBSinfection on Sky News with Iwan Thomas MBE talking about his son Teddy's group B Strep infection and Kate Rogers about her son Frank. Frank has cerebral palsy and epilepsy due to a group B Strep infection. Read Kate's story on page 3.

The campaign aims to get another 50 hospitals signed up to the GBS3 trial. This is a huge clinical trial of routine testing for group B Strep, and needs a total of 80 hospitals to take part. So far it only has 30 on board, and needs another 50 by the end of September 2022.

This trial is the best chance of getting the evidence to introduce routine screening for GBS in the UK.

“It is a now or never moment,”

said Jane Plumb, chief executive of Group B Strep Support, who has been fighting for the routine testing of pregnant women since she lost her 17-hour-old son Theo in 1996.

“Without robust evidence, the policy won't change, and the trial is absolutely the best and probably only shot at getting the evidence to effect change.”

Two babies a day develop group B strep infection, typically sepsis, pneumonia or meningitis. Every week, one of those babies dies, and another baby survives with a lifelong disability. This is unforgivable because most of these infections are preventable.

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Iwan and Teddy

Arthur Teddy Iwan Thomas MBE, the Olympic runner, whose first child Teddy fell ill with group B Strep infection soon after birth, commented,

“Watching Teddy covered in tubes fighting for his life in intensive care was the worst experience of my life. That's why I'm so passionate about the GBS3 trial succeeding, so other families, don't have to go through what I and many others have. It's outrageous that in 2022 babies are getting sick and dying from a preventable infection.”

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At the time of writing, an incredible 3,700 people have taken part in our campaign and written to their MP about the GBS3 trial. Your support has been phenomenal, thank you.

If you haven't yet taken part, please do at gbss.org.uk/MP

Frank and Kate

Frank Kate first contacted the charity five years ago when her son Frank was born. Frank seemed healthy at first but quickly stopped feeding and, within hours, had a seizure. Here Kate shares her story.

“I remember doctors telling me that my three-day-old son was critically ill with meningitis, resulting from a group B Strep infection. I felt incredibly guilty that it was a bacteria that I had carried and passed on to Frank and that I didn't know anything about it. Frank has cerebral palsy and epilepsy but is thriving.

Frank's incredible, and we wouldn't change him for the world. It isn't easy to know that this could have been prevented.

In April, I shared my story with Sky News as part of the #EndGBSinfection campaign because I'm determined to prevent other babies from being put at risk.”

Kate is urging hospitals to join the GBS3 trial before the end of September. For more information about the campaign, see page 3.

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Uma

Uma Birju considers himself very fortunate that his wife, Preya, and younger daughter, Uma, are here today.

“After a high-risk pregnancy, Preya’s waters broke on 9 January 2021 and we made our way to the hospital. As we were in a pandemic, I couldn’t stay with her, so I retreated to the car, where I waited for hours until she messaged to say I should go home.

The next day, as I still couldn’t see Preya, she was giving me updates and we were both informed that they were going to liaise with obstetrics and haematology consultants on the Monday morning if Uma hadn’t arrived.

That evening Preya messaged me, saying she felt shivery, weak and dazed. Not long after, she messaged me again to say come to the hospital. I could never in a million years imagine what was about to happen.

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The consultant explained that Preya needed an emergency c-section because both Preya and Uma were distressed and in a lifethreatening situation. While I was trying to process everything the consultant had said, Preya was rushed to the operating theatre.

Left alone, I felt helpless, scared, numb, lonely and fearful of the worst.

On Sunday, 11 January 2021, I met Uma and held her for the first time. It was an emotional moment as Preya wasn’t there with me as she had developed maternal sepsis during labour and was in recovery. Uma was in NICU as she had group B Strep sepsis.

Uma kept on fighting and, after ten days in the hospital, Preya and Uma were finally allowed home. This was an actual moment of relief, joy, and happiness. We started researching group B Strep and realised we weren’t alone with many mothers and babies being affected. We couldn’t believe a simple test could have prevented so much trauma and heartache for us as a family.

We must continue to raise awareness of group B Strep and campaign for change until GBS screening is routine in the UK; we’d never heard of it until this happened to us.”

Birju took on the challenge of walking 100K in March and raised an incredible £1232.

Share your story Personal stories are essential in helping to raise awareness of group B Strep. Some of the ways we feature personal stories include through campaign emails, web stories or social media. If you are happy to share your story with us, we would love to hear from you. For more details please email info@gbss.org.uk

Arthur

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Arthur

Arthur Arthur was Robyn’s third baby and she'd never heard never heard of group B Strep before it happened to them. Here Robyn shares her story.

“At ten days old, Arthur woke up from his nap with a high temperature and a high-pitched cry. We rang 111 for advice, and they sent an ambulance. Due to covid 19, I had to go with him to the hospital while my husband stayed home with our other children. I was so unprepared for what was going to happen next.

Arthur was transferred straight to resus, where they began to start treatment. The doctors told us it would be hour by hour whether he would pull through.

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Doctors confirmed he had late-onset group B Strep meningitis and sepsis. We spent two weeks in hospital, and thankfully, Arthur has made a full recovery, passing all his development health checks.”

Tilly-Rose

Tilly-Rose When Tilly-Rose was born, she looked perfect. It wasn't until a nurse began to worry about the grunting sounds she was making that a midwife took her to the Neonatal Intensive Care Unit (NICU). Here her mum Hayley shares her story.

“I was terrified and had no idea what was happening. After lots of tests, doctors confirmed that Tilly-Rose had sepsis due to group B Strep. After two weeks in hospital, we were able to bring her home. I had never even heard of group B Strep before, and now I would recommend all pregnant women to get tested during pregnancy.

If it wasn't for the fantastic nurse who noticed her grunting, Tilly-Rose might not be here today.

She is three now and full of life.

When her baby brother, Oscar, was born, I was given antibiotics during labour and he was perfectly healthy. It is vital to be GBS aware; A simple test could save babies' lives.”

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Beni

Walk 100K in March Thank you to all our supporters who took part in the Walk 100k in March Challenge and raised over £21,000 for Group B Strep Support.

Beni “I walked 100k to raise money for the babies who are sick like I was. People raised money when I was sick, which helped us, so I want to help others.”

Beni contracted an early-onset group B Strep infection in 2016. Following nearly six weeks in NICU, scans showed a bleed to the brain and areas of damage, and it was unclear what quality of life Beni would have.

Beni’s parents contacted GBSS to find the answers and information they needed and 10

now raise awareness and funds for the charity. They would like Beni’s story to help save other families going through the same experience.

Caroline and David are so proud of Beni for everything he’s faced and overcome, and for doing the Our Walk 100k in March challenge, he raised £355.

Theo and Amy

Amy and Theo Amy and her son, Theo, took part in the challenge and completed 151.26k throughout March and raised £531.

“Thankfully, I was told I carried group B Strep in pregnancy which meant I was offered antibiotics in labour, and Theo was monitored after he was born. We walked to and from the baby group and enjoyed lovely long beach walks with ice cream.

I loved having a reason to get outside and how everyone in the Facebook group supported each other.

I know that the money we have raised will make a difference in supporting those families affected, raising awareness, and improving prevention and research.”

Are you ready to take on a challenge?

Whether you want to run, walk, cycle, swim or skydive, we have the event and support for you. Visit gbss.org.uk/events

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Melissa

In memory of Madison Veda Melissa raised an incredible £1691 in memory of her daughter Madison by bravely shaving her head and donating her hair to the Little Princess Trust.

“On the 18 April 2022, I had my head shaved as this date marked ten years since we announced to the world that we were expecting our first child together.

I loved feeling every movement and hearing her heartbeat at my antenatal appointments.

Sadly, Madison died peacefully on 11 December 2012 after a two-day fight against group B Strep meningitis. Since losing Madison, we have received unbelievable 12

support from the charity, and I wanted to raise money to help them continue to support families who sadly find themselves in our situation. I was blown away by the total raised on her memorial day.”

Kodi

Kodi Kodi's mum wanted to show her support for all the help GBSS had given them and raised £175 by holding a raffle at her son Kodi's christening party.

“After finding out during pregnancy I was positive for GBS, I knew that I had to go to the hospital once labour had started. At 40 weeks pregnant, I arrived at the hospital, and the midwife told me I was 2cm dilated and sent me home. Within an hour, my waters had broken, and I rushed back to the hospital.

My son was born, but I never had time for the antibiotics. We were doing well until the nurses came to do his stats and rushed him away because of breathing difficulties.

The nurse took him to ICU, where doctors confirmed he had sepsis due to a group B Strep infection.

I blamed myself. How did this even happen, and why wasn't I given antibiotics when I first went into the hospital.

I felt fortunate I could bring Kodi home.”

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Marathon Photos Live

London London Landmarks LandHalf Marathon marksthon 20222022 London’s most scenic half marathon, the London Landmarks, returned to the streets on Sunday, 3 April 2022, and what an incredible day it was.

Congratulations to all 13 #TeamGBSS runners that took part. You indeed were terrific! Our incredible runners took on 13 miles, passing all of London’s most famous landmarks, including Big Ben, St Paul’s Cathedral, Nelson’s Column, the Gherkin, the Shard and the Tower of London, and celebrating the city’s heritage. They raised over £8000 between them and made us all so proud, and we loved cheering them on.

Jasmine “The whole experience of running for Group B Strep Support was truly meaningful, worthwhile, and honestly a day I will never forget.”

Sign up to secure your place in 2023 gbss.org.uk/events/london-landmarks/ 14

Group B Strep Conference Our annual Group B Strep in Pregnancy and Babies Conference took place virtually on 12-13 July 2022. It was a huge success, with world-leading experts on group B Strep sharing updates and insights on the latest developments in group B Strep detection, treatment and prevention. There were over 550 delegates, many attending on the day, with others watching on catch up.

The conference also saw us announce Dr Carol J Baker as the charity's new Global Vaccine Engagement Adviser. Dr Baker is a highly accomplished infectious diseases clinician, teacher and vaccinologist. She is affectionately known as “the Godmother of group B Strep prevention” for her groundbreaking research into GBS disease, and we're delighted to be working more closely

with her to push for the development of a safe and effective GBS vaccine that would save so many lives.

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Robyn and Arthur, page 8

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