July is Group B Strep Awareness Month (GBS) so iCandy asked Kate Rogers, mum to Frank and Wilf, to share her story to help spread the word about a simple GBS test which can easily prevent the life-threatening infection in babies.
So what is Group B Strep? Perhaps you already know, or maybe this is the first you are hearing of it. I wanted to share some of the facts that I’ve learnt about GBS since it affected my family just over 3 years ago.
GBS is a common bacteria carried in the vagina and rectum of as many as 20-40% of women. Carrying GBS is not harmful to you but on rare occasions it can be passed to your baby during delivery. Whilst the vast majority of babies who come into contact with GBS will not become ill, there is a small chance that your baby will develop GBS infection and in some cases this can lead to more serious infections such as sepsis, pneumonia and meningitis.
Screening for GBS is not routinely offered to pregnant women in the UK, and as it presents with no symptoms there is no way of knowing whether you are a carrier. However you can buy private home testing kits from as little as £35 and if you test positive you should inform your midwife and should receive antibiotics in labour – which is a very effective way of treating any potential infections. For more information please head to https://gbss.org.uk/
So now onto my experience. I fell pregnant with my son Frank in 2016. A much-longed for pregnancy, I did everything I thought I should do – attended all my antenatal appointments, NCT classes, I read several books and all the leaflets I was given – however nowhere along the way did I come across any information about Group B Strep. Frank was born at full term after a straightforward labour and delivery. We took him home the next day and everything seemed perfect. However, on day 3 during the early hours of the morning he suddenly seemed reluctant to feed. We spoke to a midwife who reassured us but after another hour or so we felt uneasy so decided to take Frank to A&E.
Initially they didn’t seem worried as other than being off his milk he didn’t seem poorly in any way but over the next few hours he deteriorated dramatically. After a few hours in A&E a blood test showed that he had an infection and we were transferred to the Children’s Ward for further investigation which included a lumbar puncture to test for Meningitis. Before we could get the results Frank had a seizure. I pulled the emergency cord and the room filled with Doctors and Nurses and we were ushered out. Over the next hour Frank continued to seize and Doctors made the decision to sedate and ventilate him. A senior Doctor took my husband and I into their staff room and explained that our tiny 3 day old baby had Meningitis and was critically ill. They couldn’t care for him at our local hospital and would need to transfer us to an Intensive Care Unit in London.
I simply cannot describe how that felt. Just a few hours ago we were at home in this blissful newborn bubble feeling on top of the world. Now our world was falling apart, we were begging Doctors to tell us that he was going to be ok but they simply didn’t know.
We had an agonising wait for a specialist retrieval team to come and collect us as Frank needed a NICU transport incubator to be taken safely in the ambulance. It was actually a paramedic from the retrieval team who first mentioned Group B Strep to us. She told us that it was the leading cause of Meningitis in newborns. I felt so guilty, as though I was responsible for my son being so poorly.
At around midnight we eventually arrived at Kings College Hospital and Frank was settled into a private room in their Paediatric Intensive Care Unit. The next morning a team of Doctors came to see us to explain the situation. It was confirmed that Frank had Group B Strep Bacterial Meningitis. He was seriously ill and they couldn’t tell us at this stage whether he would survive. We spent every day and night sat by his bedside and our family came to sit with us, for some of them it was their first time meeting him. By some miracle he responded well to treatment and after 5 days they began to try and wean him off the ventilator to see if he could breathe on his own. It was explained to us that the Meningitis can cause brain damage and there was no way to know the extent of the damage and if Frank could even breathe on his own. Amazingly, he did and the next day even managed to drink from a bottle! He needed to see out the course of antibiotics but no longer required intensive care so we were transferred back to our local hospital where the team who had been there on that first day were so overjoyed to see him!
We spent another two weeks in hospital before finally being discharged. But we knew that our journey wasn’t over, there was still no way to tell whether Frank had suffered brain damage and it would simply be a case of waiting to see when or if he met milestones.
The next few months were tough. We were dealing with the trauma of what we had been through whilst also anxiously waiting to see if Frank’s development progressed. By the time he was around 4 months old it was clear that he had suffered some after-effects and by the age of 1 was diagnosed with Cerebral Palsy and Epilepsy.
Frank is now 3 years old. His Cerebral Palsy is severe, he can’t sit, walk or talk and has many challenges. Despite this he is the happiest boy you will ever meet! It sounds terribly cliché but he has taught us so much about life. The way he deals with his disability and his attitude to life is inspiring. Everyone who meets him falls in love with him instantly. He doesn’t let any of his physical challenges get in his way, he has a walking frame and enjoys running around the house crashing into all our walls and furniture! He is always laughing and has the cheekiest sense of humour that I am sure is going to get him into trouble later in life! As you can probably tell we are so incredibly proud of him and so grateful every day that he is here with us.
It can be hard knowing that a simple test and course of antibiotics could have prevented what he went through and continues to deal with. It’s the reason I am passionate about talking about it and raising awareness. If you are currently pregnant or likely to be in the future I urge you to do your own research into Group B Strep. Speak to your midwife and if you don’t get the information or answers you need then visit https://gbss.org.uk/ or give them a call. They are a fantastic charity who raise awareness and campaign for improvements in prevention strategies and have been a great support to our family over the years.
Finally a huge thank you to iCandy for allowing me to share my story and to everyone who took the time to read”.
Antibiotics during labour can significantly reduce the risk of baby getting ill