GBSS Printed Newsletter November 2023 by Group B Strep Support

GBSS News

November 2023

#GBSaware

Inside Welcome ��3 News ��4 Ruben’s Story ��6 Our support ��8 GBSS Awareness Month ��10 Lyra’s Story ��12 Global GBS Conference ��14 A spotlight on some fantastic fundraising efforts ��16 Delilah’s Story ��18 How will you get involved? �� 20 Reuben’s Story ��22

Upcoming Events London Landmarks Half Marathon

7 April 2024

TCS London Marathon

21 April 2024

GBSS Conference

15 May 2024

Group B Strep Awareness Month

July 2024

World Sepsis Day

13 September 2024

World Meningitis Day

5 October 2024

Baby Loss Awareness Week

9 – 15 October 2024

The Big GBSS Bake Sale

All Year Round 2023/24

For more information on how you can get involved visit gbss.org.uk/get-involved/ Front cover image: Leon Mum Toni recently shared this picture of Leon with us celebrating his 1st birthday. Leon developed group B Strep infection twice as a baby, leading to sepsis. Toni told us “I’m so grateful for the GBSS website as I have spent a lot of time reading here, from the first diagnosis until now and it’s been such a support knowing we aren’t alone in what we experienced.” 2

Welcome Hello, I hope this message finds you well. It’s my pleasure to welcome you to our latest 6-monthly newsletter. As CEO and co-founder of Group B Strep Support, I am so grateful for your continued dedication and support in our mission to improve maternity safety and protect newborns from group B Strep infection (GBS).

prevent group B Strep infection in babies across the UK. Thank you for being a vital part of our journey. Together, we can make a real difference in the lives of families and their precious little ones. With my very best wishes,

In this issue, we have some exciting updates to share, stories of impact, and important information on how we’re working to identify, treat, and

Jane Plumb Chief Executive MBE FRCOG FRSA

If you would like to receive regular news and updates from Group B Strep Support please join our mailing list gbss.org.uk/email-newsletter/ or scan the QR code.

News Exciting news for newborn health! In May, NHS England released version 2 of their Core Competency Framework (CCF). This framework sets out the training standards for healthcare professionals in maternity and neonatal care.

enable targeted antibiotic treatment. This exciting development could lead to improved outcomes and reduce unnecessary antibiotic use. We are looking forward to following the progress of this research.

The updated CCF now makes it mandatory for ‘group B Strep in labour’ to be included in staff training. This means that all maternity and neonatal services are now required to provide specialised training to their staff, addressing GBS.

Maternal vaccine progress In South Africa, Pfizer’s vaccine for pregnant women has shown promise in preventing life-threatening GBS infection in newborns. This vaccine generates antibodies in pregnant women, which are passed on to their babies, lowering the risk of both early-onset (0-6 days) and late-onset (7-90 days) GBS infection.

This England-wide training mandate is a significant step forward. It will enhance the knowledge and education of healthcare staff regarding GBS. Moreover, it will help bridge the existing gaps in information, care, and support experienced by families, regardless of their location.

A GBS vaccine for pregnant women could reduce antibiotic use and prevent more infections compared with current methods. This could lead to fewer stillbirths, maternal infections, and late-onset infections caused by GBS, which are currently unaddressed by antibiotics during labour.

New test to improve diagnosis time An international team of researchers at Imperial College London is developing and validating a new blood test that can rapidly detect and distinguish between 18 infectious or inflammatory diseases. The test is expected to provide results in a fraction of the time compared with current diagnostic tests, which will

While the research was in South Africa, the vaccine’s potential extends worldwide. Further research is ongoing. 4

By your side, every step of the journey We understand that group B Strep impacts families in many different ways. Alongside specialist medical negligence solicitors, our team includes trained nurses and midwives. They provide us with the expert knowledge so we can support you in accessing the best rehabilitation treatment during your claim; allowing you to focus on recovery whilst we obtain full compensation to cover all future needs. Contact our group B Strep specialist: Laura Preston

0330 995 5513

LJPreston@slatergordon.co.uk Authorised and Regulated by the Solicitors Regulation Authority.

Ruben Ruben

“Ruben was 29 days old and a beautiful growing, happy baby. I remember that Friday evening so clearly; he fed as normal but was violently sick. His breathing was slightly laboured and he made a funny little noise when I put him

down; he just wasn’t himself and something made us phone for an ambulance. Whilst on the way to the hospital his temperature spiked and his heart rate rose. That was the beginning of all the doctors, nurses, tubes and machines,” said mum Tori. 6

on 4 August 2022, at just 33 days old. GBS was never mentioned to me during my pregnancy. I just wish I’d have known more about the devastating effects of GBS and that late-onset GBS infection existed.

Ruben deteriorated very quickly. Within a few hours, he was put on a ventilator and transferred to a PICU at a different hospital for specialist treatment. It wasn’t until the next day, his family received the diagnosis of late-onset GBS meningitis and sepsis.

Since our experience, Group B Strep Support’s website has been a great source of information following Ruben’s death for us and other friends, and there is a strange comfort in knowing you aren’t alone when there are so many other parents out there experiencing the same.”

Over the next four days, Ruben underwent numerous CT and MRI scans, and brain monitoring but things went downhill. His little body was overwhelmed with the bacteria. He began to suffer multiple seizures, each one hinting that there was extensive damage to his brain. Tori says, “We had to make the heart-wrenching decision no parent should ever have to make; to move Ruben to a hospice and take him off his ventilator. He passed away peacefully between me and John,

To mark what would have been Ruben’s first birthday, Tori signed up to our 100k My Way challenge and raised nearly £600.

In Memory Giving First of all, we would like to offer you our heartfelt condolences. Whether you have lost someone recently or some time ago, we are here to listen and support you. Creating a Tribute Fund is a wonderful and lasting way to remember a loved one. In partnership with the memorial website charity MuchLoved, we can provide you with a way of creating a tribute page in memory of your

special person which, if you wish, can also be used to raise funds for Group B Strep Support. You can also invite family and friends to contribute to the fund, share memories, thoughts, and stories, light candles, and add music, photos, and videos.

For all the different ways you can donate in memory of a loved one please visit gbss.org.uk/donate/giving-in-memory/ 7

Our support For more than 25 years, we have provided invaluable information and support to expectant parents, new parents and health professionals. We strongly believe that no one should face the challenges of GBS alone, and we are here to provide support to make sure that doesn’t happen, for as long as we are needed.

Our support includes: •

A confidential listening service.

•

Information resources for families and healthcare professionals wanting to know more about GBS.

•

Help and support to those suffering from the devastating consequences of GBS infection.

and connect you with other families willing to share their experience.

Our Helpline is available from 9am to 5pm on weekdays, and we provide more than just information*. Our aim is to make you feel comfortable, provide a listening ear and address your queries, all while maintaining confidentiality.

We also moderate and run a Facebook group for families whose baby has been affected by GBS infection. This space provides a safe, online platform for families to connect, share their journeys, and find comfort in knowing they are not alone.

You can reach us on 0330 120 0796 during office hours or send us an email at info@gbss.org.uk.

Join our group to share your experiences, seek and offer support, and combat feelings of isolation. If your family has been touched by GBS, you are more than welcome to become a member. We are here for you.

While we’re not counsellors or specialists, we do have experience of speaking with families affected by GBS - from those carrying the bacteria and those whose babies have suffered from GBS infection. We can signpost you to other organisations if needed

*Please note that we do not provide medical advice or diagnoses. If you require medical guidance, we strongly encourage you to contact your healthcare professional. 8

How we’ve made a difference We receive nearly 1,000 calls, emails and contacts via social media to our Helpline every year. We wanted to share some comments from those we have been able to make a difference to: “The biggest thank you I can give to Group B Strep Support is thank you for being there to answer those questions that no one else will.”

“I found your service extremely useful when my daughter was very poorly after being born with Strep B. She is now 16, so a long time ago, but would definitely recommend your service and ask pregnant friends to be aware of Strep B in pregnancy and birth.”

“I found your website extremely helpful and our chat very encouraging and would just like to thank you for putting my mind at ease. In my first pregnancy, I was told by a receptionist that I was a carrier of Strep B and had to find my own information about it, but a lot was very scary. My labour was normal but very restricted. I felt like I didn’t have many choices. This time around, I’m a lot more prepared.”

“Your service provided information about Strep B in a very scary time that no one else could.” “I’m so grateful for the GBSS website as I have spent a lot of time reading here, from the first diagnosis until now and it’s been such a support knowing we aren’t alone in what we experienced.”

“I’m so glad I found the GBSS website when I was pregnant. It has provided me with lots of information and I just wanted to thank you for your charity and support.”

“I called the Group B Strep Support helpline who were absolutely amazing, lots of great information about what was to come now that I had tested positive.They sent me some leaflets to read and stickers for my maternity notes. After speaking to the helpline I was really reassured that I knew what I had to do.”

“My call was answered quickly, and the person I spoke to was incredibly helpful and could answer all of my concerns at a very stressful time for me. You were such a help to me. Thank you.”

Group B Strep Awareness Month In July, we highlighted the significance of understanding and preventing GBS. We shared real-life stories, and advocated for routine testing and preventive measures. Our goal is to empower parents and healthcare practitioners to reduce GBS infection incidence, improve treatment and ensure the well-being of both mothers and infants.

MPs unite for Group B Strep Awareness Month In July, we organised an event in Parliament to discuss group B Strep with MPs. The aim was to raise awareness and promote the prevention of this devastating infection in newborn babies. The event was co-hosted by Steve Brine MP (pictured above with our CEO Jane Plumb) and Andrew Gwynne MP, and we were thrilled to have 13 MPs attend and show their support for our work.

picked up information to take away and discussed ways in which they could help improve awareness and prevention of the infection in their communities.

Gaps in education and testing According to our research, twothirds of new and expectant mothers are not receiving any information about group B Strep from healthcare professionals, even though the Royal College of Obstetricians & Gynaecologists (RCOG) recommended in 2017 that all pregnant women should be given this information.

Several spoke with us about constituents who’d been affected by GBS and asked them to attend, or their own personal experience of it during a pregnancy or a partner’s pregnancy. During the event, MPs had their photo taken to show their support for better awareness. They also 10

Our survey of new and expectant mothers to mark July’s Group B Strep Awareness Month also revealed the following:

on GBS for all NHS Trusts since May 2023, there are no nationally available training materials for Trusts to use yet.

•

While most (95%) had heard of the infection, fewer than two-thirds (62%) felt confident recognising symptoms in a baby.

•

66% would like to learn more about GBS from their healthcare professional.

•

93% support the introduction of national testing for GBS during pregnancy.

During Group B Strep Awareness Month, we worked with Lexington Communications to distribute the findings of this research to the press, which led to coverage in key media outlets such as the Independent, The i, The Daily Mirror, and BBC South East, as well as regional press and radio. We want to give a big thank you to all the families who shared their stories as part of our press work. Our coverage was seen by around 141 million people across broadcast, print, and online media.

Although a simple swab test for GBS has been available privately for 20 years, it is not routinely available on the NHS. The NHS currently takes a risk based approach to identifying GBS. However, most high-income countries routinely offer antenatal testing to all pregnant women, including the United States, Canada, Germany, France and Spain.

Thank you! We would like to express our gratitude to the families who have shared their stories with us, and to those who continue to do so. Your personal experiences offer a unique and valuable perspective on the impact of group B Strep infection and help us to raise awareness and build a sense of community among those who have shared similar experiences.

The cost of the test would be around £15 for the NHS, while home-test packs are available privately from around £40. We continued to call for midwives to receive better training and education on GBS, to ensure they’re fully supported to inform expectant parents about prevention, testing that may be available and key signs of infection. Although NHS England has mandated training specifically

If you have not yet received a response from us after sharing your story, please bear with us.

Lyra

At eighteen days old, Lyra was put to bed after, a feed at 9.30pm. She had an unsettled night and by 5am the next morning, she was still crying and making a whimpering sound. After a visit to the GP, Lyra

continued whimpering, started to look more yellow and still wasn’t feeding. Mum Abigail knew something wasn’t right, so headed to A&E.

Abigail says, “It felt like we were seen within 10 seconds of arriving. The next thing I know, a doctor comes in, looks her over, and then another doctor. I was told they needed to take bloods, so I followed the doctor to this room, where he bent her wrist over and started putting a cannula in (not just a heel prick like they have done before).

bacteria had been confirmed as GBS. She had a very high temperature that took a couple of days to manage but, other than that, she responded well to antibiotics. We were told that looking at the cells in the sample of fluid around the brain, they were diagnosing meningitis as well, so she would need 14 days of treatment. Luckily, we could do the last six from home by just going in once a day as she moved to a one-a-day antibiotic.

As he was taking blood, the room filled with doctors, probably five of them, all looking at her and talking in doctor code as if I wasn’t there. I realise now they were just trying to decide what to do urgently. I cried into my face mask, feeling overwhelmed. One of the doctors then said to me that they were treating her for a severe infection and needed to stabilise her.

Lyra having late-onset GBS sepsis and meningitis was a terrifying time and one that will stay with us forever. I hadn’t even heard of GBS before Lyra’s experience. Luckily, when I found the GBSS website after my daughter was diagnosed, it was a fountain of knowledge. We are very grateful for all the work that goes into it!

Over the next couple of days, we were told they were pretty sure it was a bacterial infection looking at the blood cultures. It had entered her bloodstream, and they needed to check the fluid around the brain. Lyra had to have four lumbar punctures to be able to get the fluid. At some point during this time, we were told the

We are so incredibly lucky that she responded as well as she did to the treatment, and the doctors acted so quickly at the hospital.”

Introducing the Meningitis Flag GBS is the primary cause of meningitis in babies under three months, so the launch of the Meningitis Flag has been particularly exciting this year.

Research Foundation, Confederation of Meningitis Organisations (CoMO), Sanofi, Laura Spring, and inspiring para-athletes Théo Curin, Davide Bartolo Morana, and Ellie Challis, who have all overcome meningitis. Our CEO Jane chairs CoMO’s Advisory Council so, at GBSS, we proudly fly the flag.

The flag represents unity, resilience, and a shared commitment to defeating meningitis. It was created in collaboration with the Meningitis

Global GBS Conference Our CEO Jane Plumb co-led the Parent & Patient Stream again at ISSAD (International Symposium of Streptococcus Agalactiae Disease). She and Oliver Plumb our Advocacy & Information Manager were delighted to be invited as guests of the organisers. ‌ “It was brilliant. The voices of parents and patients started each stream, reminding us why we all were there: to stop GBS infections.

It was inspiring to hear about new and ongoing research into better GBS prevention, including vaccines. And super to meet with researchers, health professionals, vaccine developers, funders and others.” ‌ Exciting developments are expected from the conference, and we will keep you updated. 14

Proud to support Group B Strep Support If you or a loved one has been affected by group B Strep (GBS), we can support you. From medical negligence and protecting your child's future, to education and family law, our experts are here for you.

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A spotlight on some fantastic fundraising efforts At GBSS, we greatly appreciate your fundraising efforts for our charity and the incredible impact they have. Whether it’s through birthday fundraisers, office bake sales, challenge events, or quiz nights, your generosity knows no bounds. We want to highlight some of our supporters who have gone above and beyond to help prevent GBS infection in babies.

Jimmy’s skydive in memory of Tommy-Jay activities were held to inform staff of best practices and ensure pregnant women and people were aware of the available screening tests. The hospital also raised £460 through a cake sale.

Jimmy did a skydive, raising £757 in memory of his nephew. He told us, “Tommy-Jay was a beautiful baby boy, full of laughs and cries. Unfortunately, when he was born he had GBS meningitis. After three months, he lost his battle and joined the stars. Tommy-Jay’s passing has been, and continues to be, hard for all of us. I continue to find ways to get involved with the work of the charity.”

Theo turns one Mum Lydia told us, “From not knowing anything about GBS to having a newborn in intensive care fighting for his life was not what we imagined the start of our journey as parents to be like. We asked friends and family to donate to Group B Strep Support, raising £550, instead of buying him gifts, because of the valuable support we received from the charity after Theo developed GBS sepsis.”

Big GBSS Bake Sale Newham Maternity Hospital organised an awareness week with staff and clients to raise awareness of GBS and its impact on newborn babies. Throughout the week, 16

Teddy’s memorial walk

Sheffield 10k in memory of Nova

In September, Amy along with family and friends organised a memorial walk in memory of son Teddy, who passed away at five weeks old from GBS sepsis.

Sophie and friends wanted to raise awareness of GBS and honour Nova who was born sleeping in December 2022, whilst supporting parents James and Acen. They raised £1,994.

Around 100 walkers joined them for the nine-mile route. £2,255 was raised on the day (just with collection buckets!), bringing their total to £10,682!

Sophie told us, “We took part in the Sheffield 10k event to show our support to our very best friends James and Acen – although it is more appropriate to call them family. They faced an agonising wait to find out what happened to Nova as last year, in a mere four hours, Acen’s healthy pregnancy ended in a nightmare with no answers. As friends, we see how they struggle every day mentally, physically, and emotionally. We are hoping to make it an annual event to honour Nova and raise awareness.”

Mum Amy says, “We were overwhelmed with all the support and love that was shown to us but, of course, were also incredibly sad as Teddy wasn’t here with us. This is just the start of our fundraising attempts and awareness raising. We refuse to let Teddy’s death be in vain and will do everything we can to keep his memory alive and, in turn, hopefully, let other families know about GBS during pregnancy and the signs to look out for once their baby has been born.”

Planning your own event or taking part in an organised sporting event or challenge? We’d love to know more so that we can support you every step of the way. Email us at fundraising@gbss.org.uk

Delilah

Mum Melanie was booked for induction. On the day, she had a high temperature and heart rate, as well as a headache. A swab confirmed she had the flu, and she continued with the induction.

Whilst on the oxytocin drip, contractions were strong and painful. Melanie says, “I knew something wasn’t right at this point. I kept telling my partner, ‘I just know I can’t do this, something is off,’ but he reassured me that I could. 18

My temperature kept spiking to 39°C, and I was only 3cm dilated, so at around 8pm the next day, the decision was made for an emergency caesarean, which I somehow signed the consent form for with the shakiest hands.

the ability to walk and see to her post-birth, all stripped away from me due to this infection.

I came across the GBSS website the day after our diagnosis when scouring for information, as the doctors didn’t tell us much about it. I felt a sense of relief, knowing that in any further pregnancies, I’m only a few clicks away from any support I may need and also being able to order an Enriched Culture Medium (ECM) test, should my hospital not provide one.

I heard the consultants saying they were going to prepare IV antibiotics for myself and baby due to having two risk factors for sepsis. GBS was never mentioned. My beautiful daughter, Delilah, was born at 21:29 on 21 December, although I didn’t see her until she was about 10 minutes old due to her having to be cannulated and tested. Once we were back in our room and settled, and after lots of cuddles with my mum, my partner got her dressed, as I still couldn’t move from the spinal block. I don’t remember much of the night as I was on a lot of pain relief and having broken sleep.

I have directed friends who have recently got pregnant to their website too, not to scaremonger but to educate and inform. So, it’s not just me and my family that Group B Strep Support helped, but others, too. That’s why I signed up to the GBSS skipping challenge.

The next day, a doctor came to see us to say my placenta was sent for tests, and this showed GBS was present. I’d heard of this infection before, but that’s it. Just the name. I knew nothing about it, how it affects babies or anything like that. The doctor then went on to explain that we would have to stay in as Delilah needed a seven-day course of antibiotics, and so would I.

I’ll never get those moments back, and I pray every day that more people are aware of this and that the NHS one day will do routine testing in pregnancy, no matter what. No mother should have to miss out on such things, and ours was only a moderate case. We are so lucky that Delilah made a full recovery and won’t have any lasting effects. Some mothers are not as lucky as I was, and that’s why I really do hope GBS routine testing will become a regular thing in maternal care.”

Having a mixture of baby blues, pain from the c-section and the news I was just given, I just wanted to cry. The skin-to-skin I wanted, being at home with her for her first Christmas, 19

How will you get involved? There are many ways you can make a difference to our work so that we can continue to provide vital information, support, and resources to promote positive change. Whether you are interested in taking on a challenge, volunteering, or making a regular donation, there are plenty of opportunities to get involved and make a meaningful impact.

Take on a challenge

London Landmarks Half Marathon Sunday 7 April 2024

Great North Run Sunday 8 September 2024

Enjoy running through the closed roads of London.

Run this special half marathon from Newcastle to South Shields.

The Big GBSS Bake Sale

Virtual challenges

Hold a bake sale in your school or workplace! Run a competition like ‘guess the cake weight’ for donations, and the winner gets the whole cake!

From walking to skipping, we have a range of virtual challenges that you can take part in wherever you like.

Do something amazing today, sign up online at gbss.org.uk/events 20

Volunteering

Make a donation

Are you interested in volunteering and contributing your time to a good cause? We have a variety of opportunities available, including positions at our head office in Haywards Heath, as well as at events and in communities throughout the UK.

Any donation, regardless of size, can help save the lives of newborns and bring us closer to achieving our vision of a world free from group B Strep infection in babies. If you choose to gift aid your donation, a simple tick can increase its value by 25% at no extra cost to you.

For more information, please visit gbss.org.uk/get-involved/ volunteer/.

Head to gbss.org.uk/donate/ or scan the QR code.

Greenhalghs Craft Bakery Great Manchester Run After two families at Greenhalghs Craft Bakery experienced the devastating effects of GBS infection, there was no hesitation in GBSS being the charity to run for at the Great Manchester 10K and half marathon. The team of 56 raised £12,331, along with vital awareness of GBS. Finance Director, Ray, shared his story: “When my grandson, Zachary, was 33 days old, he developed a group B Strep infection, which later turned to sepsis. We were so lucky that he received the lifesaving care he needed in time. Thankfully, he was well enough to return home after ten days and later made a full recovery, but we know just how lucky we were. He is now nearly two and half years old.”

Whether you’re an individual or a business, there are so many ways to give, and so many ways to get involved. Why not sign up for our regular newsletter to stay in the know about our upcoming events? Simply email us at admin@gbss. org.uk to be added to the list. If your company is looking to choose a charity of the year, we’d love to talk to you about the opportunities we have here at Group B Strep Support. 21

Reuben

When Susannah was pregnant, she asked about getting tested for GBS after watching Iwan Thomas share his experience on This Morning, a couple of years before. She was repeatedly told not to worry, it

wasn’t needed, so left it. However, upon admission for a bleed at 32 weeks, Susannah was swabbed and, days later, was told she was carrying GBS.

Susannah says, “At 34 weeks, I had an emergency c-section – totally forgot about GBS and worried about prematurity, weight gain, and feeding tubes. I had never heard of late-onset GBS infection.

Due to his age, we were seen quickly. The doctor checked him over, then sent a registrar in to take bloods. Before his eyes, Reuben suddenly became listless, purple, mottled, began taking breaths every 10 seconds, and his temperature rose to 40 degrees.

At eight weeks old, we started to go out and about and enjoy him, however, he was more upset than usual and had been having some strange nappies. We were advised to go to the GP, who couldn’t find anything obvious: no high temperature, feeding, and weeing so hydrated. He sent us home with instructions to go to A&E if he deteriorated.

The next couple of hours were a blur, with big teams of doctors and nurses running many tests, getting hydration, antibiotics, breathing support and feeding tubes to stabilise him. His results came back from the lab – GBS. Suddenly, it all came back to me – was it from me? Was it my fault? I felt awful. The following day, the lumbar puncture returned positive for group B Strep meningitis. Reuben was treated with a month of antibiotics and came home in December 2022.

At 7pm, we had the first smile from Reuben. I fed him and put him to bed. At 10pm., I went to bed and, as usual, picked him up to offer a feed before I nodded off, but he wasn’t interested. I put him down, expecting him to wake up hungry before too long. I woke at 1am. and thought it was odd he hadn’t cried for a feed.

I found out about Group B Strep Support while searching for answers whilst in hospital, and they have been invaluable in answering my questions and queries about how my son contracted this infection and put my mind at rest. Reuben is now nine months old and has excess fluid in the brain due to his infection, so he is under continual review, but we are so grateful to have him with us. We will do anything to assist the charity and raise awareness of this terrible infection.”

As I came around, I became aware that he was making a strange groaning noise. I picked him up, and he was on fire. Something clicked inside me, a mother’s instinct, I think. I raced out of bed, pulled some clothes on, grabbed a bag, picked him up, and ran out the door, stopping for 10 seconds to tell my husband, ‘I’m taking him in.’ Upon arrival at A&E, which was heaving at the peak of the Strep A scare, Reuben was hot but awake, and I wondered if I had overreacted. 23

SAVE THE DATE Wednesday 15 May 2024 Group B Strep in Pregnancy & Babies Virtual Conference gbss.org.uk/conference2024

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