GBSS Printed Newsletter April 2024

GBSS News

Welcome

I am delighted to welcome you to our latest newsletter� Since my husband and I started the charity in 1996, our mission has been to stop group B Strep infections in babies—a cause very close to our hearts�

This edition is packed with updates and stories highlighting our work towards this goal. Inside, you’ll find inspiring tales of families who have overcome adversity, news of our annual conference in May, and the tireless efforts of our supporters and volunteers

Our journey began from a personal tragedy but has become a beacon of hope for many� With each newsletter, we aim to educate, inform, and encourage our readers to join us

towards our goal of stopping group B Strep infection in babies Your support enables us to continue our work—educating healthcare professionals, supporting affected families, and advocating for better prevention strategies�

Thank you for standing with us Together, we are saving lives and shaping a future where group B Strep infections in newborns will become a thing of the past�

With my very best wishes,

Jane Plumb MBE FRCOG FRSA Chief Executive and co-founder, GBSS

We would love to know your views on the newsletter and what you want to see more of! Please fill out our short survey here.

News

Medicines and Healthcare products Regulatory Agency (MHRA)

The MHRA is a government body agency that is responsible for ensuring that medicines, medical devices, and vaccines work, and are acceptably safe�

Our CEO, Jane Plumb and our Advocacy and Information Manager, Oliver Plumb, toured the MHRA laboratories in South Mimms, Hertfordshire�

We met with and had a presentation from Dr Arif Felek, who leads MHRA’s work supporting the development of a group B Strep vaccine�

Oliver commented: “A vaccine is the ‘holy grail’ of group B Strep prevention and while no vaccine is yet available, it’s very encouraging that MHRA are collaborating with vaccine manufacturers and other global stakeholders to accelerate it being used in the UK .”

A special thank you to the team for hosting a bake sale on the day and raising £87�82�

E-learning module for midwives

The GBSS team is excited to announce that we’re developing an e-learning package for midwives�

The

module will update midwives’ understanding of :

• group B Strep carriage and infection

• potential effects on young babies

• the proactive steps that can be taken to safeguard against it

This training will give midwives valuable updates on the latest research and guidelines, and help with their important work of advocating for families in their care

Our thanks to generous grants from Pfizer and the Scottish Government, which enabled us to produce this high-quality educational resource

We are looking forward to launching the e-learning package very soon�

Marcus

Marcus was born healthy and discharged from hospital after staying overnight. After nine days, he became poorly, though there were no obvious signs at first. After a big feed at midnight, he had an unusually high-pitched cry, but his

parents managed to settle him back to sleep. Early the next morning Marcus’s condition spiralled downhill very quickly. Within hours of arriving at A&E, he needed to be transferred to a Paediatric Intensive Care Unit for further care.

Mum Catherine says: “It wasn’t until then that a doctor on the critical care team asked if Marcus had been tested for group B Strep�

Marcus suffered a severe brain injury due to swelling, and despite the tireless efforts to save him, we had to say goodbye as he took his final breaths in our arms�

He was diagnosed with group B Strep sepsis the next day� We are heartbroken that we have lost our little boy and our future with him ”

We were so sorry to hear Marcus’s story, and grateful to Catherine for allowing us to share it here with you�

Remembering Marcus

“When Marcus passed away, I saw the 100K My Way challenge and wanted to take part in his memory to replace the feelings of grief with feelings of something that began to resemble peace� I wanted to replace heartbreak with a purpose and to help other families, loved ones, or partners with information and support

We are enormously grateful to everyone who donates to Group B Strep Support in memory of a loved one.

Last year we received over £28,000 of incredible In Memory donations from our wonderful supporters� Every gift, no matter the size, makes a difference.

There are several ways to remember your loved one, such as donating in their memory, setting up a tribute page, holding a collection at a funeral, taking on a challenge or hosting a memorial event

The GBSS helpline was incredibly helpful� I found comfort in speaking about what happened to him�”

Catherine, Marcus’s Mum�

Catherine set up a JustGiving fundraising page and to date has raised over £1800 in memory of Marcus�I

If you would like to discuss donating in memory of a loved one, setting up a tribute page, or taking on a challenge in memory of your loved one please contact us on 0330 120 0795 or at fundraising@gbss.org.uk

For more information visit our website: gbss.org.uk/InMemory or scan here:

About Group B Strep 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 group B Strep alone, and we are here to provide support, for as long as we are needed.

National Helpline

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

Peer Support for Families

We have a closed support group specifically for families who have experienced the impact of group B Strep infection on their child� Join our private Facebook group, which is a safe space for families to share their experiences, find support, and connect with others who have been affected by group B Strep.

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�

Campaigns and Research

We campaign to improve the prevention, identification and treatment of group B Strep infections in babies This includes raising awareness and seeking the introduction of testing in pregnancy� We actively support research that looks at new and better ways to prevent these infections in babies�

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

How we’ve made a difference

We receive nearly 1,000 calls, emails and queries via social media to our Helpline every year. We wanted to share some comments from people we have helped:

“Thank you� This is exactly the information and guidelines about group B Strep I needed to take to my next appointment ”

“The GBSS helpline was incredibly helpful I found comfort in speaking about what happened after my son passed away�”

“I had never heard of GBS and was shocked when I tested positive I’m so glad I found the GBSS website� It has provided me with lots of information and I just wanted to thank you for your support�”

Amy’s Story

Amy’s son Heath was born on 12 December 2022. She feels lucky she was swabbed for group B Strep in her pregnancy due to her hospital participating in the GBS3 trial.

Amy says: “I’m so glad I found the GBSS website when I was pregnant� It provided me with lots of information and I just wanted to thank you for all the information and support ”

“After my firstborn recovered from an unexpected group B Strep infection, your invaluable support helped my family prepare for my second child’s safe arrival and helped me advocate for a brilliant birth experience for us both ”

“We have solely relied on the GBSS website for everything we now know about the infection� The information has been invaluable and has helped us to understand what happened to our baby girl And what the future may hold for us if we were to try and have another baby�”

Dannan

Born six weeks early, Dannan was healthy until he was five weeks old, when he didn’t take his 1 am feed. His health began to decline and his parents were advised and his health began to decline. His parents were advised to go to A&E, where

their worst fears were confirmed. Dannan was diagnosed with GBS meningitis and sepsis. He underwent a lumbar puncture and MRI and was put on high doses of pain relief and medication.

Mum Clare told us: “Dannan spent three gruelling days in NICU (Neonatal Intensie Care Unit), being fed through a tube� I recall hearing Ariana Grande’s song ‘One Last Time’ and praying for my son’s recovery� On the third day in NICU, Dannan was off both tubes and taking milk and therefore no longer needed to be there�

However, Dannan’s journey was far from over� He spent three more weeks in the hospital, where he also had colic and reflux from all the medications. He was then transferred to a different hospital, where he stayed for two weeks before being allowed home with antibiotics�

Six years on, Dannan is the happiest boy, but is unable to do most daily activities himself.

He hasn’t met the ‘normal’ milestones of crawling, sitting, walking, or climbing without help, but we as a family celebrate our own milestones� Dannan uses a high-low chair, wheelchair, stander, walker,

specialised bed, handling belt, splints for his feet during the day and for his hands at night, and a lycra suit to help with muscle tone�

He is on an array of medication for reflux, constipation, and drooling. He’s also started new medication recently to help with muscle tone� Despite all this, Dannan is a wonderful, loving, happy, eager child� His official diagnosis is ‘severely learning disabled with cerebral palsy and dystonia’ I will continue to share our story, so others know that it is life-threatening, and it does happen�”

Fundraising as a Family

Thank you, Clare, for taking on the GBSS 3000 Squats Challenge during a tough lockdown month� Also, a big shout-out to Dannan for climbing to the Cloughmore stone and raising £750 last year Your story is a testament to the strength and determination of your family to face and overcome challenges - thank you for sharing it with us�

Group B Strep in Pregnancy & Babies Conference - May 15 2024

Our fourth annual virtual conference will take place on Wednesday, 15 May 2024. This event will bring together world-leading experts on group B Strep to discuss prevention policies, testing options, antibiotic usage, and the progress towards a vaccine.

The conference is our flagship event for health professionals, and a vital way for us to improve doctors’ and midwives’ awareness and knowledge about group B Strep This is a priority after a survey we commissioned in 2023 found that two-thirds of new and expectant mothers were not receiving any information about group B Strep from a healthcare professional

This is despite recommendations to do so in multiple national guidelines for nearly seven years�

This year’s event has some superb speakers presenting on a range of topics In one particularly exciting session, we will hear from the key researchers of the groundbreaking GBS3 Trial�

We’ll also learn how the GBS3 Trial worked in a large and busy NHS Trust and both midwives’ and women’s attitudes to testing�

The GBS3 Trial is an ongoing large research trial designed to establish whether testing all pregnant women is better than the UK’s current approach�

The Government has committed to reviewing its policy on group B Strep testing once the results of the trial are released in 2025�

Looking further into the future, we’ll hear why there is such a global focus on developing a GBS vaccine and what progress has been made so far� Sessions will cover updates and early data from the two companies leading the group B Strep vaccine race. MinervaX and Pfizer.

A group B Strep vaccine is the ‘holy grail’ for preventing these infections, as it would stop late-onset group B Strep infections (7-90 days) that there are currently no known ways of preventing A vaccine would also prevent stillbirths, miscarriages, and maternal infections�

Our Global Vaccine Engagement Advisor, Dr Carol J Baker (affectionately known as ‘the Godmother of group B Strep prevention’), will share her 50+ years of experience in the field and her predictions for the future of group B Strep prevention�

DrCarolJBaker,GlobalVaccine EngagementAdvisor

While there’s research on the impact of these infections on babies, there’s little available on the impact on the wider family� We’re pleased that research from Denmark will be presented, sharing the long-term outcomes for mothers of babies who had group B Strep disease�

We hope this research will be repeated in the UK and widened to include partners and non-birthing parents

Our conference is a great way for doctors and midwives to refresh their knowledge on group B Strep�

BUY YOUR TICKET

Group B Strep in Pregnancy & Babies Conference 2024

Wed 15 May 2024 9:00 AM - 5:30 PM BST

Visit gbss.org.uk/conference2024 or scan here

Look At Them Now

It’s always heartwarming to hear from families about how their child is doing after a group B Strep infection. A huge thank you to Luke, Abi and Sharon for all getting in touch.

Joey

Luke, Joey’s Dad, shared his experience of becoming a parent with us and how Joey is doing now�

Their first night as parents was emotional and tiring, but unfortunately not for the usual reasons Something wasn’t right, and within hours, Joey was rushed off for treatment and surrounded by doctors�

After three agonising days, a lumbar puncture confirmed that Joey had group B Strep meningitis It broke

Luke’s heart to watch his son struggle, but he knew that Joey had fight in him and support from so many incredible people

Luke says “Thanks to some amazing doctors he was given antibiotics and he started to improve daily, watching wires and tubes being removed and seeing those cheeky eyes starting to look a little brighter.”

“I just wanted to update you that he has now been signed off and is developing well We have been told he is a bright little boy who has a cheeky side�”

Rory

Abi, Rory’s Mum, shared the amazing news about her son Rory, who despite battling a GBS infection at birth, has just aced his Mensa IQ test!

He is now one of the youngest members of the high IQ club� He took the two-hour test in Exeter just a fortnight after his 12th birthday

Rory said “Only a few of the questions were challenging and some were quite easy. When I first got the results, I didn’t understand what it meant, but then I realised it was a brilliant result.”

Abi proudly says: “He is blessed with an incredible brain�” Rory’s story is a testament to the resilience and the power of the human mind Way to go, Rory!

Phoebe

Sharon, Phoebe’s Mum says: “Phoebe was a healthy 8lb 5oz when born. She was just a few hours old when we were on our way to the ward, and our angel of a midwife noticed she wasn’t right; she had been screaming but was then quite listless and grunting�

She took her to a SCBU (Special Care Baby Unit) doctor who had the foresight to assume it was group B Strep and treated her straight away�

Fortunately, due to the quick actions of the hospital staff, Phoebe made a full recovery.

We were never brave enough to have another baby but could not be prouder of our girl, who is 26 this year and living her best life doing her dream job as an animal keeper ”

100 Skips a Day Challenge

Thank you to everyone who participated in our 100 Skips a Day challenge in October 2023, raising an impressive £9,645 to support our mission of saving babies’ lives.

Rachel

Rachel, who benefited from our work, shared her story with us After her daughter Willow was born with GBS meningitis and sepsis, Rachel received invaluable support from the charity�

She raised £592 by taking part in the October skipping challenge last year�

“I feel strongly about the work GBSS do in campaigning for more awareness, research, and hospital trials.

Thanks to the information and support I received from the team, I was able to request antibiotics for my second child, who was born healthy�”

Join our Community Fundraising Facebook group and be part of the incredible force working together to stop group B Strep infection in babies�

Great North Run

The Great North Run is the largest half marathon in the world, taking place in North East England each September. The event is famous for its inclusive atmosphere, unbeatable en-route entertainment, and warm welcome.

Beth

“I participated in the Great North Run to raise money for Group B Strep Support, a charity that’s very close to our hearts. My son Cruz contracted group B Strep sepsis shortly after birth, and has now been diagnosed with autism, global delay and is non verbal The charity provided invaluable support to me and continues to help me whenever I have questions�

Thank you, GBSS, for all that you do. Participating in the Great North Run was an amazing experience, and I loved every second of it.”

Beth raised an incredible £1,200 and will also be running for Team GBSS this September�

We’d love you to take part in an event or challenge in aid of GBSS this year too�

Please visit gbss.org.uk/events or scan here�

Which will you choose?

If you’re looking for exciting fundraising challenges, below are some ideas to inspire you.

Keep an eye on our website as we add new challenges regularly gbss.org.uk/events or scan here

Royal Parks Half Marathon Sunday 13 October 2024

It is the only half marathon that travels through central London and four of the Royal Parks�

Ultra Series Challenges Year Round

The UK’s biggest and best series of treks and trail runs

The

Big GBSS Bake Sale Year round

Hold a bake sale in your school or workplace! Run a competition like ‘Guess the Cake Weight’ for donations�

Inflatable 5K Year Round

The world’s largest family-friendly and best inflatable 5K obstacle run.

Regular Giving

While our GBSS Community Fundraisers will be looking for innovative ways to raise funds this year, we also need the continued support of our regular donors.

When you donate regularly, you become a part of something extraordinary Your ongoing support helps us plan, ensuring our vital work continues providing information and support to those who need it most�

To set up a regular gift please visit gbss.org.uk/donate, call us on 0330 120 0795 or scan here�

Regular Giver Sue tells her story:

“The charity was there for us at a time when we needed them most. Nearly losing one of my twins is the only motivation I need to give a small amount each month. I believe, wholeheartedly, that Group B Strep Support will achieve its mission to stop GBS infection in babies.”

Sue and her husband Chris recently celebrated their 60th birthdays and asked for donations instead of traditional presents Their generous friends and family raised a total of £750 for GBSS�

A donation of £5/month for a year could help pay for our online support group for families affected by GBS infection, offering peer support and guidance�

A donation of £15/month for a year could help contribute to distributing an educational presentation on GBS for doctors and midwives involved in maternity care�

A donation of £30/month for a year could help towards funding research to determine how to stop devastating GBS infections in babies�

Tilly, mum to Phoebe, shared her pregnancy and birth experience with us. She was fortunate to have none of the usual symptoms that women can get during pregnancy and enjoyed every day of it.

She went into labour at forty one weeks and five days. After a few hours, she opted for pethidine which they were unable to prescribe due to her rise in temperature and her baby’s heart rate. This was their first sign that something wasn’t right.

Phoebe

Tilly says: “I carried on and had gas and air instead My temperature continued to rise, and my little girl’s heart rate did too, so I was rushed for an emergency caesarean� After 10 minutes, my beautiful little girl was born at a healthy 10 75lbs, and I was just in awe of her ”

However, things took a turn for the worse when her baby was rushed off to the neonatal unit. Her partner ran in to tell her that their baby’s oxygen had dropped, and she needed medical attention fast During this time, Tilly suffered a substantial bleed and was extremely poorly herself, so she was still unsure what was going on� It was all very overwhelming

“The following morning, I woke up in complete shock and with so many questions� I just wanted to be with my baby and to know how she was� The midwives took me to see her in the neonatal ward, and I was in utter shock� My beautiful little girl was all wired up to oxygen machines and feeding tubes�”

They were told she had an infection and needed antibiotics and would hopefully be better soon. Tilly spent the next few days visiting her and holding her tiny hand, promising her she’d make her better. She was still trying to recover from the operation and blood loss herself, so was very weak.

“We’re now a happy little family, and although the trauma from the birth will always stay with me, I love being a mummy Group B Strep is something everyone should be tested for in pregnancy, or at least made aware of, especially as I now know it can be prevented�”

Thank you to Tilly for participating in the Great North Run with her mum this September to raise awareness about GBS infection in babies and to help prevent it from happening to others�

Albie was born on 26 December 2023. Mum Becca was discharged from hospital even though he was grunting when he was born, which is a sign of group B Strep infection. Everything seemed fine until the second night when Albie

refused milk and started making coughing and gasping noises. The next morning, his parents took him to A&E where the doctor initially thought he had the start of a chest infection and was going to send them home.

Albie

Becca says: “I refused because Albie wasn’t having any milk Other doctors saw him and noticed signs of an infection, so they started antibiotics� Later that evening, Albie started to deteriorate and had seizures. It wasn’t until the next day that they did a lumbar puncture, but by then we were getting transferred to another hospital�

When we got there, they diagnosed him with GBS meningitis� An MRI showed that he was brain damaged We don’t know how long we will have Albie for, or if he does survive how severe his brain damage will be�

But with just one swab and my local hospital picking up the signs he had an infection before he was discharged, we may have had a completely different outcome.

I was unaware of group B Strep, and didn’t know I could be tested during pregnancy� I’m hoping this will change, because if I had been swabbed, Albie’s infection could have been prevented� Even though He was taken to hospital within 48 hours, it was too late for him to recover I feel like we are living in a nightmare�”

Life at home

Albie has now been home for about seven weeks but this was actually because we thought he was going to pass away� One other problem the Strep B meningitis caused him was to not have much control over

his temperature and sadly it was dropping and so was his heart rate, even on a heated mattress�

We decided we wanted him home so we could give him his last few hours as family… but seven weeks later the little monkey is still here! We have our ups and downs and it is hard work as he’s on medications throughout the day to support his seizures. He hasn’t actually had any since being home and has managed to have some control of his temperature�

Albie is still doing well but we still don’t know how long we have due to the extent of his brain damage, so at the moment we just take it day by day enjoying him But we have to carry on because he is definitely showing some sort of fight in him!

Thank you to the families who have shared their stories with us If you would like to share your GBS story please e-mail info@gbss.org.uk or scan here�