2020 Spring/Summer Newsletter

GBSS

Spring/Summer 2020

News

INSIDE Olympic sprinter Iwan Thomas 3 Inspirational Stories 4 University talk 7 Virtual Events 9

Image: Heidi

#StrepBaware

Welcome

The GBSS Team

It’s great to be able to talk with you all at the end of our second month of lockdown. When I started Group B Strep Support after my own family’s tragedy, I never imagined that everybody’s lives would be turned upside down by another infectious disease.

Of course, working remotely has challenges for us all. Many of the big participation events, including the London Marathon, London Landmarks and Ride London have been postponed or cancelled, severely impacting our income. Yet the need for our information and support is higher than ever.

We’re doing our utmost to keep our essential services going and respond to the increased demand. July’s Strep B Awareness Month is fast approaching. Most of that activity will be virtual, and we’ll ensure new and expectant parents get the information they need about group B Strep.

Together, supporting each other, we will get through this difficult time.

To all of our supporters, thank you, and stay well.

Jane Plumb MBE Chief Executive

Jane Plumb MBE, Chief Executive & Founder Jane Grout, Fundraising & Office Manager Oliver Plumb, Policy and Public Affairs Manager Emily Robertson, Accounts Assistant Tim Keenan, Head of Fundraising Roz Moseling, Office Administrator

Front cover image: baby Heidi.

Heidi’s mum Tara called the helpline on the day her waters broke and she had just discovered she had Strep B. “This resulted in me being able to make much better-informed decisions, confidently, before the birth of our little girl who arrived safely and healthy. I’m so glad you were there when I needed help. “

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 newborn at birth it can cause serious infection.

We are the only UK charity dedicated to eradicating 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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Clockwise from top left:

We provide up-to-date evidence based information on GBS to families and health professionals and support to affected families.

We want every pregnant woman to be given information on group B Strep during routine antenatal care and offered the opportunity to have a GBS-specific test late in pregnancy.

Ultimately, GBSS wants GBS infection in babies to become a thing of the past.

Olympic sprinter Iwan Thomas to run London Marathon to raise awareness of group B Strep infection

Iwan Thomas told us, “When my son Teddy was born on 29th December 2018, I was the happiest man in the world.

I suddenly knew what true unconditional love was, he came out and I burst into tears.

I went home to have a shower and got a phone call from the hospital. They said please come back, Teddy’s sick and in intensive care. I later learned he’d got group B Strep infection, something I’d never heard of before.

It was the worst day of my life, looking at my everything covered in tubes in an incubator,

fighting for his life. I wanted to swap places with him. I’m not religious, but I was saying: ‘Please God, take me instead.’ If the infection had spread, we knew that even if Teddy survived, he could be brain damaged. For my partner’s sake, I put on a tough facade but inside I was crumbling.

Thankfully after an agonising 10 days in hospital, Teddy pulled through and came home with us. He’s since made an amazing recovery and is doing well. ” Find out more about Iwan’s fundraising at justgiving.com/fundraising/gbssiwanthomas.

I’m planning to run the London Marathon in October to raise awareness of group B Strep, and funds for the charity Group B Strep Support, who do a brilliant job fighting for better prevention and treatment for Strep B in the UK.

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Inspirational Stories Spencer Lawley’s challenge: Marathons, triathlons & ultimate Ironman challenge Spencer’s life was turned upside down when he was told his wife and little boy had developed sepsis due to group B Strep infection. The family watched nervously as baby Hugo was treated in the Neonatal Intensive Care Unit.

They both made a full recovery, but feel their infections could have been prevented if only they had known more about group B Strep.

“I feel now it’s my duty to raise awareness!

Over 7 months I will be taking part in challenging events & training, starting with the cross-country half

Ange Graff’s Half Marathon A massive thank you to Ange Graff who took part in the very wet and windy Brighton Half Marathon this February.

She raised a total of £240 for Group B Strep Support.

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marathon at Harewood House, followed by a series of marathons and triathlons and ultimately leading up to the UK Ironman in

September. Wish me luck!”

Spencer has already nearly hit his target of £1,500.

Kelly Armfield pictured centre

Golf Club makes us Charity of the Year Lady Captain Kelly Armfield and her fellow golfers at Shirehampton Park Golf Club in Bristol have raised £2056 after choosing us as their Charity of the Year.

Both Kelly’s sons developed group B Strep infection at birth.

They held golf days, wine and cheese nights, pamper nights and had coffee mornings and raffles.

“Raising money for a charity that means so much to me and my family has been an absolute honour.

Fingers crossed this money will help spread the word even more and make people aware of something that is so common and yet few people actually know about it.”

Dylan’s haircut challenge

A huge thank you to our fundraiser Dylan. He’s raised an incredible £1610.

Dylan took on an extreme haircut challenge at just 9 years old. What a star!

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Baby Poppy’s story Victoria told us her 11-day old daughter Poppy was taken to a walk-in centre for a spot on her toe. “Poppy would not stop crying, screaming crying. The doctor took her temp and stats and told us to go straight to the hospital. At hospital she had multiple tests including a lumbar puncture…”

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Poppy had developed septicaemia due to late-onset group B Strep infection. Mum Victoria had not heard of GBS and felt sick and guilty.

It took two rounds of antibiotics to clear the infection. Her heart rate was 230bpm when it should have been about 90. Baby

Poppy spent a week in Great Ormond Street Hospital.

Poppy fully recovered and now has a little brother Leo. When mum Victoria was pregnant with Leo she tested to see if she was carrying group B Strep. “I wish I’d known about the test when I was pregnant with Poppy!”

Conferences

University talk

In January we spoke at the London Maternity & Midwifery Festival, where we discussed improving group B Strep prevention with Professor Jacqueline Dunkley-Bent OBE, Chief Midwifery Officer (pictured above with Jane & Oliver Plumb).

Lynsey White joined us for a half day training session with 3rd year midwifery students at Middlesex University. It was a lively session, with lots of great questions.

We had a similar discussion with Dr Edward Morris, President of the Royal College of Obstetricians & Gynaecologists at Baby Lifeline’s National Maternity Safety Conference.

In February, we visited the Emerald Isle to speak at the All-Ireland 2020 Maternity & Midwifery Festival in Dublin. The team had lots of interesting conversations with midwives, health-care professionals and students.

The highlight was Lynsey bravely sharing her personal experience of group B Strep.

Her first baby, Frankie, sadly died from group B Strep infection, at only 4 days old.

Middlesex have invited us back next year.

GBSS online shop When you buy items in our shop, you are making a vital contribution to our work to help save babies’ lives. All proceeds go directly to Group B Strep Support.

GBSS logo pin badge £2.50

Baby Loss Awareness pin badge £2.00

Theo Bear Soft toy £10

GBSS Car sticker £1.50

White 100% cotton T-shirts Child £8.00 Adult £10.00

See more of our items at gbss.org.uk/shop 7

Why I volunteer Alison Stanley, volunteer Tell us a bit about yourself I’m a final year student midwife, with a background in academic public health and health systems audit.

What motivated you to become a volunteer for GBSS? When I was looking for a change of career into midwifery it was important for me to get some experience within neonatal and maternal health and to understand some of the current issues in maternity.

What would you say to someone who was thinking about volunteering for GBSS? Go for it! Such a friendly and supportive charity. Lots of opportunities for people with all backgrounds.

What has been your greatest achievement volunteering for GBSS? I’ve done lots of things but my favourite is helping out on London Marathon day each year – so great to cheer our inspirational runners on.

A really fun day out too.

What’s the best thing about volunteering at GBSS? I love the work that I do for the charity, can do it flexibly to fit in with my other commitments. It’s so important that women and their families can make informed choices about group B Strep. I’ve been involved in cake sales, fun days, data analysis, public speaking and work on clinical trials as a lay representative.

A word from Dr Carol J Baker Dr Carol J Baker is widely recognised as “the Godmother of group B Streptococcus prevention.”

Her ground-breaking research led to the USA and many European countries to test routinely for group B Strep in pregnancy, and use antibiotics in labour to protect babies from GBS infection. Dr Baker’s research is still key today, as it is accelerating progress towards a much-needed GBS vaccine.

Carol says: “ I was curious and dismayed that, while in paediatric 8

training, my patients (neonates and several week old infants) began dying from a different bacterium than the one my professors said caused most infections in babies. I had many questions and when they were left unanswered, I began researching textbooks and articles, but only to be told that GBS was a disease of dairy cattle with only a few reports of human infection.

So I decided to pursue infectious disease training in 1971, began to collect and summarize my cases, storing GBS isolated from patients’ blood and spinal fluid in my

apartment, and wrote to the “inventor” of GBS, Professor Rebecca Lancefield, who invited me to Rockefeller University in New York, thus launching my research career.

What I have wanted to see for decades remains my desire - a GBS vaccine licensed for use in pregnant women worldwide.”

Virtual Events Raise money and help save lives from the comfort of your own home.

Whether you sign up to one of our activities or do your own thing, you’ll be joining our community and helping to ensure we can continue to provide support and information to families affected by group B Strep.

Virtual Steps against Strep If you are you looking for a way to keep active and stay motivated while being stuck indoors, then why not take on our virtual Steps against Strep challenge. Taking part is simple. On your own or with your family complete the distance of a 5k, 10k, half marathon or marathon in your time and in your way.

Sarah writes “Me and my daughters, Hannah and Holly, really enjoyed completing a virtual challenge for GBSS. We did walks, scooter and bike rides around our garden and local estate to complete the 26.2 miles during April and are pleased to have reached our fundraising target of £100. “

Jemma takes Steps against Strep

Hold a dinner party or afternoon tea

Jemma walked an incredible 20,000 steps a day during March as part of her Steps against Strep challenge for baby Miley.

Jemma discovered she was carrying group B Strep when her midwife called to tell her, after having carried out a swab test to check for other bacteria. Learning about group B Strep has made a big impact on Jemma and she feels strongly about making people aware of the infections it can lead to in newborn babies.

You don’t have to be face to face to raise money and make a difference.

20,000 steps a day in March!

She decided to challenge herself, and baby Miley in her buggy, to walk twice the recommended target steps per day for a healthy adult.

Dining out may not be possible right now but why not ask friends and family to donate what they would usually spend on going out to eat and host a virtual dinner party with your loved ones? Prepare your meal, agree a time to log on and you have a great dinner party without the piles of washing up to do after!

We have lots of fun ideas waiting just for you, visit gbss.org.uk/virtual-fundraising/ 9

Baby Heidi’s story Aoibheann writes “It was in March 2018 in the middle of a long period of snow in Ireland that I discovered my 8 week old daughter Heidi had a temperature.”

Heidi hadn’t wanted to feed properly that night. The next morning, Mum Aoibheann noticed Heidi was warm, so

took her temperature. It was 38.6! Heidi looked pale, her skin had started to mottle, and she was floppy and groaning a lot. After digging through the snow, they reached the ambulance halfway up the road.

Heidi had developed group B Strep septicaemia. “She

had a battery of tests,” says mum, “I never even thought of GBS. I knew before getting pregnant with my first daughter that I colonised it, but had had no problems with my 1st delivery and had antibiotics. Thankfully she came through it with no deficiencies and is a happy, healthy, crazy 2 year old.”

Your donation is helping to save babies’ lives £100 Could help us reach expectant parents by providing 25

antenatal clinics with posters to highlight the importance of knowing about group B Strep.

£200 Could provide 4,000 families with a high-quality

information booklet, giving them the vital knowledge they need to make an informed choice during pregnancy.

£500 Could pay for a seminar for MPs on national policy and research initiatives to reduce group B Strep infection and support those affected. £1000 Allows us to responded to 55 hours of helpline

enquiries from new and expectant parents and their families, providing information and support.

To donate or set up regular giving, please visit: gbss.org.uk/donate 10

Mum Stacey’s story Stacey’s little girl was born 3 weeks early as she had stopped growing.

Shortly after birth, she struggled to breathe and her lung collapsed. She was diagnosed with pneumonia and sepsis.

She was transferred to a specialist baby unit and put

on antibiotics. “I was told 5 days after giving birth that I had group B Strep,” mum Stacey writes, “Thankfully she has made a full recovery.”

She spent 3 weeks on a ventilator while her body recovered. She also received medication for her liver as she was jaundiced.

“I am a biomedical scientist, so I am very much aware what this means to unborn babies. I never thought this would happen as I already have a little boy who is now 4 and never had any issues at birth…I know not everyone is that lucky and I honestly cannot believe this is not routinely screened for.”

Leave a Gift in Your Will For many people, leaving a gift in their will is a natural way of continuing their support for a cause they have held dear during their lifetime. By leaving a gift to us, you can help to make sure that we can keep informing new and expectant parents about group B Strep, so babies don’t suffer avoidable group B Strep infections.

There are different ways you can gift money to us. After you have provided for your loved ones, you can leave: • A residuary gift, which is a share of what remains after provisions have been made. A residuary legacy has the added benefit of keeping pace with inflation.

• A fixed sum gift. This is when you leave an exact sum of money to us. It’s also known as a ‘pecuniary gift’.

• A specific gift. This could be anything, ranging from jewellery to shares.

We recommend using a solicitor to draw up your Will.

For more information on ways you can support us, please email info@gbss.org.uk or call us on 0330 120 0795.

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JULY IS Strep B Awareness Month #StrepB2020

Get ready for Strep B Awareness Month at gbss.org.uk/AwarenessMonth 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