GBSS Printed Newsletter February 2023

GBSS News

Welcome

Welcome to our newsletter! I am thrilled to be CEO of Group B Strep Support, the charity dedicated to raising awareness and providing support for families affected by group B Strep (GBS). GBS is a common bacterium that can cause serious infections, typically in young babies, such as meningitis and sepsis. Despite being usually preventable, the number of GBS infection in babies is still unacceptably high.

Our mission is to educate new and expectant parents and health professionals by providing accurate and up-to-date information about GBS, support families affected by it, and advocate for better GBS prevention and treatment.

We have accomplished a lot in the past year, including hosting virtual meetings, providing

iInside

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educational materials for families and health providers, and working on research projects to improve GBS prevention and treatment.

Thank you for your support and dedication to our cause. Together we can make a real difference in the lives of families affected by GBS. With best wishes,

Jane Plumb Chief Executive MBE FRCOG FRSA

“I was petrified when I became pregnant for the second time seven months after my son Jenson was born poorly with group B Strep infection.” Mum Jorgia shares her story.

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“When Noah was six weeks old, he appeared very sleepy and did not want to feed.” Mum Alex shares her story.

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Facebook Challenges - hear about some of our most popular virtual events that took place during 2022.

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Run for GBSS – we have selected a few of our favourite charity runs from 2022 to celebrate how wonderful our amazing team GBSS runners really are.

About Group B Strep Support

Group B Strep Support (GBSS) is the world’s leading charity working to eradicate group B Strep infection in babies. We educate the public and health professionals about group B Strep and provide information and support to affected families through.

National

We provide confidential support and information to families and professionals in several ways including digital, telephone and email services.

Support for professionals

We are the main provider of patient information on group B Strep in the UK and attend training days to talk with health professionals involved in maternity care.

Support for families

We support families suffering from the devastating consequences of group B Strep infection as well as expectant parents concerned that their baby is at risk of group B Strep infection.

Campaigns and Research

We campaign to improve awareness of group B Strep infection and for the introduction of effective and accurate testing. The charity actively supports research that looks at new and enhances existing ways to prevent group B Strep infection in babies.

Upcoming Events

For more information on how you can get involved visit gbss.org.uk/get-involved/

Front cover image: London Marathon

Peter Morris was keen to raise funds for GBSS after hearing all about the charity's work from his father and Chair of the Board of Trustees, Dr Edward Morris. Peter raised £2650 and told us, “This was by far the greatest day of my life!”

Ezrah

When Ezrah died at 19 days old from lateonset group B Strep infection, his parents, Sarah and Craig, were heartbroken. They want to see all pregnant women being offered a test late in pregnancy and symptoms of infection in babies being discussed as part of maternity care. Sarah shares their story:

“Ezrah became poorly very suddenly at home. He needed to be transferred by specialist ambulance from our local hospital to Bristol Children’s Hospital due to how unwell he was. He was diagnosed with sepsis and meningitis as a result of group B Strep.

Together with family and friends, Sarah and Craig have raised over £18,000 for GBSS by setting up a MuchLoved Tribute Page in his memory and participating in various events. They have also helped change antenatal care appointments in their local area where GBS is now discussed during pregnancy.

Sadly, Ezrah had suffered a severe brain injury, we had to say goodbye as he took his final breaths.”

Ezrah with Sarah and Craig

Alyx

Jorgia was petrified when she became pregnant seven months after son Jenson was born with a group B Strep infection. Here Jorgia shares her story.

“Jenson contracted sepsis and pneumonia after birth due to a group B Strep infection. Thankfully, he made a full recovery, but that didn’t stop me from feeling anxious when I found out I was pregnant with his sister.

The doctors kept her safe and kept me in the hospital; being monitored until midnight at 37 weeks when my baby decided she was on her way!

Following UK guidelines, I was administered IV antibiotics to prevent her from getting a group B Strep infection. I received the full dosage before my daughter, Alyx, arrived healthy.”

Jenson and Alyx

Parent Advisory Panel

All our Parent Advisory Panel members have recent personal experience of group B Strep and have been selected for their expertise and passion for improving the parent-facing work of the charity.

Paola Mantovani

Paola spent most of her career at Citigroup in London and is now in the digital asset space looking after investor relations and operations for a digital fund manager in the UAE, where she relocated in 2021.

“I am proud of being part of the GBSS Parent Advisory Panel and a finance committee member, trying to help as much as possible, spread awareness about this life-threatening infection to parents-to-be and health

professionals. My first son was born with a group B strep infection. No baby deserves to go through that, and no parents should live this when bringing a child to life.”

Paola loves horseriding, antiques, eating good food and raising her three boys.

Paola and Giulio

GBSS's Group B Strep Conference

We are delighted our 2023 virtual conference, Group B Strep in Pregnancy and Babies will be on Wednesday, 17 May 2023.

This will be an informative and inspiring event, featuring presentations and panel discussions with leading experts in the field, including Dr Carol Baker, Prof Philip Steer, Prof Paul Heath and Dr Caroline Trotter. Families will share their experiences and there’ll be online networking opportunities.

Over 550 delegates registered for our 2022 conference: doctors, midwives, nurses, public health specialists and of course families. All presentations and panel discussions will be recorded and available online to delegates for three months after the event.

Find

Jimmy

Mike searched the GBSS website for information when his son Jimmy became ill just two hours after he was born. Here Mike shares his story.

“Whilst holding him, he had his first seizure and stopped breathing…

...Holding Jimmy’s first babygrow and his little hat, I walked down the hospital corridor…

…trying to compute what had just happened and what I would tell his mum Sophie.

Two days after Jimmy was born, we were informed that Sophie had tested positive for group B Strep and he had contracted group B Strep infection during labour. We had never

now thriving, having made a full recovery, and thankfully having no lasting effects.”

Today Mike is a member of the charity’s Parent Advisory Panel, working to ensure his traumatic experience is not shared by other expectant parents.

Mike and Jimmy

Noah

When mum Alex was 34 weeks pregnant, she went into premature labour with Noah. Alex shares her story.

“When Noah was six weeks old, he appeared very sleepy and did not want to feed. After being told not to worry by my Health Visitor over the phone, a good friend saw my concerns and took us both to A&E.

We spent three days with him sedated and various tests before they said that he had meningitis, which was likely to have been caused by late-onset group B Strep infection.

Our care was outstanding the whole time and one of our consultants said that there are a lot of symptoms of meningitis other than the well-known rash.”

Noah has since recovered and has completed his first year of school.

Share your story

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

Noah

60 Miles in June

Thank you to all our supporters who participated in the 60 Miles in June challenge and raised over £16,000 for Group B Strep Support.

Avril

Avril signed up to participate in the 60 Miles in June Challenge in memory of her granddaughter, Pippa, who sadly died from group B Strep infection at just one-day old.

“I’m pleased to say I completed my challenge and enjoyed every minute! I walked 70.15 miles in total and raised £490 and, of course, lots of awareness about group B Strep.

Thank you to all my supporters, those who donated and who have provided encouragement by joining me on some of my walks.”

Are you ready for a challenge?

Visit our website to find an event near you

It’s incredible that just by wearing the t-shirt, how people stop and ask what it’s all about.

Avril and friends

Community Champions

We are grateful to all our volunteer Community Champions who help support us with our challenge Facebook groups.

Lois

Lois became a community champion after she participated in a squats Facebook challenge. She is passionate about raising awareness of group B Strep after her daughter Markeshia sadly passed away from a late-onset group B Strep infection. Lois told us:

If you love spending time on social media, then GBSS would be delighted to hear from you. We are always looking for Volunteers to help inspire and motivate our supporters in our upcoming challenges. E-mail the fundraising team for more info fundraising@gbss.org.uk

“I’m a teacher, so I recognise that knowledge is power. These challenges help raise funds that will help save babies' lives.

Lois and Markeshia

Darcey

Darcey’s family and friends raised £260 by holding a garden party and raffle during last July's Group B Strep Awareness Month.

Darcey contracted group B Strep infection 20 minutes after she was born. Bethany, Darcey’s mum shares her story.

“I noticed something wasn’t right. She was making grunting noises, had a very weak cry and had spit bubbles coming from her mouth.

After a visit from the doctor, she was immediately put on oxygen and had wires all over her chest in an incubator, and with a cannula in her tiny hand.

I had never heard of group B Strep nor knew how dangerous this infection could be. After 11 days in the hospital her bloods were clear, and we were finally able to take her home.”

Darcey recovered. Bethany wants more families to be informed of GBS in pregnancy.

Darcey

Aimee

At five days old, Aimee was rushed to the hospital because of severe dehydration. Mum Charlotte was told that Aimee had meningitis and that the next 24 hours would be critical. Charlotte was told to say goodbye.

Aimee uses a wheelchair. She cannot sit, stand, walk, or talk and is independently tube-fed. She is a very happy little girl who makes everyone smile. Aimee got a trike for her birthday, and since then, she has learnt to pedal it on her own, which is a massive achievement. Aimee did a sponsored trike ride and raised £225 for GBSS.

“Group B Strep Support has been a massive help in raising awareness of group B Strep and supporting me through those first few days when Aimee was ill. I will be forever grateful for them.”

“I had never heard of group B Strep before and for a long time blamed myself.”

TCS London Marathon 2022

Sunday, 2 October 2022, marked a special day in the charity calendar. We were delighted to have nine runners participate in the TCS London Marathon, raising vital funds and awareness. Our nine runners raised over £18,000. A huge thank you to them, and to everyone who donated.

GBSS volunteers were based out on the route at mile 17 to spur on our charity heroes. As always, it was a challenging and emotional day for everyone, and we cannot thank all our runners enough for their time, effort, and valued support. You did us proud!

A huge thank you, too, to Chris Long Photography for volunteering his time to take the most amazing photos for us.

TSC London Marathon

Great North Run 2022

Attracting 57,000 runners each year, the Great North Run is the world’s largest half marathon with a warm North-East welcome and unbeatable atmosphere. The race follows an incredible city-to-sea route, starting in Newcastle city centre, running over the iconic Gateshead Millennium Bridge and finishing on the South Shields seafront.

“The atmosphere was terrific, and I loved it. The work you do at Group B Strep Support was always in the back of my mind when I didn’t want to go out, and it motivated me to continue when it got tough on the day.”

Emily who works as a Paralegal for Slater & Gordon raised an incredible £670 for GBSS and was so happy to be able to support the charity.

Sign up to secure your place in 2023 gbss.org.uk/events/great-north-run/

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, so you can focus on recovery whilst we fight for compensation. Contact us: 0330 995 6823 slatergordon.co.uk