The Things We Never Knew To Ask – Group B Strep Awareness

I sat down to start writing this blog and suddenly thought, I don’t know where to start. To talk about Group B Strep scientifically or in black and white feels like the obvious starting point, but it simply doesn’t feel like enough. Because this isn’t just about science. 

It’s about people.

It’s about families. 

It’s about emotional and physical impact, not just on the person affected, but on everyone around them. The ripple effect that reaches parents, siblings, grandparents, friends and loved ones. The moments that change lives forever. 

If you haven’t noticed already I am incredibly passionate about this topic because it sits very close to my heart. In fact passionate almost doesn’t feel like the right word. This is one of those topics that instantly stirs up emotion in me. Sadness. Anger.  Frustration. Heartbreak. Hope. Determination. A fierce desire to make sure more people know about Group B strep than I did all those years ago. 

Because awareness really can make all the difference. This week is Group B Strep Awareness week (8th-14th July). And if sharing my family’s story helps even one person ask a question, request a test, recognise a symptom, or advocate for themselves or someone they love, then it will have been worth writing. 

So, What Actually Is Group B Strep?

Ok now for the sciencey bit, so stay with me!

Group B Strep (or GBS as you’ll often see it called) is a type of bacteria that many people carry completely unknowingly. In fact, it’s surprisingly common and often causes no symptoms at all.

Most of the time, it sits harmlessly in the body and people never even realise it’s there.

The reason it’s important to talk about, particularly during pregnancy and around birth, is because it can sometimes be passed from mother to baby during labour. In many cases, this doesn’t cause any problems. But in some cases, it can lead to serious infections in newborn babies, including sepsis, pneumonia and meningitis.

But, I’m not a doctor, and this blog isn’t intended to be a medical lesson. 

The Day Everything Changed

My niece turned nine this year.

Nine wonderful years of laughter, love, determination and proving people wrong. But her story almost looked very different, it started when she was just three days old.

Yup.Three days.

As a parent now myself, I can barely comprehend how tiny that is. You’re still learning each other. Still figuring out feeding, sleeping and whether you’ve packed enough nappies to leave the house. You’re exhausted, emotional and trying to navigate this brand new chapter of life (while leaking from what feels like everywhere!).

And then something didn’t feel right. My sister noticed that her newborn baby had a high temperature.

A newborn baby with a fever.

Looking back now, that fact alone feels impossible to ignore. Trusting her instincts, she took her straight to hospital.

But instead of answers, she was sent home. Instead of reassurance, she was made to feel like an irrational first time mum who was worrying unnecessarily. I think that’s one of the hardest parts for me to reflect on, even now.

Because she was right.

She knew something wasn’t right.

A few days later, a health visitor arrived and immediately recognised that something was seriously wrong. She told my sister to take her straight back to the hospital.

From that moment on, everything moved at frightening speed.

Blue lights.

Specialist hospitals.

Tests.

Waiting.

More waiting.

Trying to make sense of information that was changing by the hour.

At first, she was diagnosed with meningitis and treated accordingly. It was only later that the correct diagnosis of Group B Strep was identified. By then, the focus had shifted. This was no longer about finding out what was wrong.

This was about damage control.

About saving a tiny baby’s life.

What followed was a series of surgeries, specialist appointments and difficult conversations that no family imagines having when welcoming a new baby into the world. And perhaps one of the most frightening things of all was the uncertainty.

There wasn’t a clear roadmap.

There wasn’t a list of answers.

Even the specialists were navigating unknown territory. We were told that the way Group B Strep had presented in such a young baby was incredibly rare and that the doctors were researching, recording and learning as they went. Not what you want to hear…

We desperately wanted certainty. Instead, we found ourselves living one day at a time.

One appointment at a time.

One surgery at a time.

Hoping for the best and fearing the worst in equal measure.

Why Awareness Matters?

If there’s one thing I’ve learned from my family’s experience, it’s this: you don’t know what you don’t know.

Before my niece became ill, Group B Strep wasn’t something we talked about. In fact, if you’d asked me about it back then, I wouldn’t have had the faintest idea what it was. And that’s exactly why awareness matters.

Not because awareness guarantees a different outcome. It doesn’t. Not because every test will provide a clear answer. It won’t. And certainly not because knowing about Group B Strep means you’ll never face complications.

But because awareness gives people a chance. A chance to make informed decisions, seek support and advocate for themselves and their families. 

Knowledge really is power.

Not the intimidating, scientific kind of knowledge that requires a medical degree. Just enough information to know that Group B Strep exists and what to look out for. 

Looking back now, that’s the part that stays with me the most. Not because I spend my time dwelling on the ‘what ifs’ – there isn’t much value in living there permanently – but because I can’t help wondering what difference it would have made if we just knew more.

Perhaps my sister would have known about Group B Strep during pregnancy and chosen to have the test.

Perhaps she would have discovered she was carrying it and been offered antibiotics.

Perhaps the outcome would have been completely different.

Or perhaps it wouldn’t.

The truth is, we’ll never know.

What I do know is that awareness creates opportunities. Even when tests don’t provide all the answers, awareness can help people recognise when something doesn’t feel right. 

My sister knew something was wrong. She was a new mum, navigating those first precious days with her baby, but her instincts were telling her that something wasn’t right.

And she was right.

I often wonder how many parents have experienced that same feeling. That gut instinct. That voice telling you to push a little harder, ask another question or seek a second opinion. To trust your gut. 

The reality is that there wasn’t one single moment that changed everything. There were lots of moments. Conversations. Decisions. Delays. Missed opportunities. A diagnosis that took what felt like forever to uncover.

And when you put those moments together, the impact can be life-changing.

It was for us.

That’s why awareness matters so much to me. Not because it guarantees a different outcome, but because it gives people the chance to be informed, feel empowered and trust their instincts when something doesn’t feel right.

Sometimes that’s all we can do.

But sometimes, that’s everything.

Nine Years Later

Nine years later, she is still here and, honestly, after everything she has been through, that in itself feels like a miracle.

The road to get here hasn’t been easy. There have been countless hospital appointments, specialist appointments, therapies, assessments and surgeries. Some planned, some unexpected, and every one of them carrying its own worries, fears and hopes.

The impact of Group B Strep didn’t affect just one area of her life. It affected everything. The way she moves, the way she communicates, the way she eats and the way she experiences the world around her.

She will never walk and will most likely never speak, although she communicates with us in the ways she knows how. She relies on others for things that many of us do every single day without a second thought. Things we often take completely for granted.

And yet, if you met her, those probably wouldn’t be the things you’d notice first.

You’d notice her smile, her determination and her ability to do everything in her own time. In fact, in our family, everything happens on ‘Jess time’ and we wouldn’t have it any other way. If Jess doesn’t want to do something, she’s probably not going to do it. And if she decides she’s ready, she’ll let you know!

What I think people often underestimate is just how much she understands.

One of my favourite examples of this is when I visit with my son. His favourite song is Wheels on the Bus and, without anyone prompting her, Jess will often find it on her screen and put it on for him.

To someone else, that might seem like a very small thing.

To us, it’s huge.

Because it’s her way of showing us that she knows him. That she remembers. That she understands what makes him happy. It’s her way of connecting with him and showing us all that she’s paying attention, even when people might assume otherwise.

Moments like that remind me that communication comes in so many different forms. You don’t always need words to show someone you care. You don’t always need words to understand the people around you.

Of course, there are moments when it’s hard not to think about the life she might have had. The milestones she may never reach and the experiences many families take for granted. I’d be lying if I said those thoughts don’t creep in from time to time.

But those thoughts don’t define her.

What defines Jess is her resilience, her strength, her personality and the joy she brings to the people around her. She continues to surprise us, make us laugh and remind us that there are many different ways to experience and connect with the world.

Because while Group B Strep changed her life forever, it doesn’t define who she is.

Nine years later, she is still writing her story.

And what a privilege it is to watch her do it.

Looking Forward

I can’t change what happened to my niece.

None of us can.

What we can do is continue to talk about Group B Strep. Continue to share information. Continue to raise awareness and encourage conversations that could help another family recognise the signs, ask the questions or seek support when they need it.

Because awareness isn’t about creating fear.

It’s about creating understanding.

It’s about making sure expectant parents know their options, know what to look out for and feel empowered to trust their instincts. If sharing Jess’s story helps even one person learn something new about Group B Strep, then writing this blog will have been worth it.

Because while we can’t change her story, perhaps together we can help change someone else’s.

Looking for more information? Head to https://gbss.org.uk