'By the time our son was one, he had received a diagnosis of Cerebral Palsy and Epilepsy'

July 4, 2019

 

Group B Strep is a bacteria carried by as many as 20-40% of adults. It doesn’t cause any symptoms so you can’t tell whether someone is carrying it without testing. Sounds fairly harmless doesn’t it? But did you know that Group B Strep is the most common cause of severe infection in newborn babies. It can cause sepsis, pneumonia and meningitis. 

Approximately one in every 1,000 babies born each year in the UK develops Group B Strep infection. Most babies will make a full recovery but sadly approximately one in 20 will die and one in 10 will survive with a long-term disability. My son Frank is that one in 10. 

Frank was born at full term after a straightforward pregnancy and delivery. We bought him home the next day and were on top of the world. However two days later our world came crashing down around us. We sat in the Intensive Care unit and listened to Doctors explain that he had Group B Strep Meningitis - the first we had ever heard of this infection. His situation was critical.

We had taken Frank into A&E that morning for poor feeding, he seemed well otherwise and Doctors initially reassured us that he most likely had a simple infection. Several hours later he began having seizures and it became apparent that it was far more serious. 


Frank spent a total of 15 days in hospital, 5 days in Intensive Care and a further 10 days at our local hospital. He responded well to treatment and Doctors were amazed at how quickly his infection markers came down.We had been told we would be in hospital for months but by some miracle we were sent home after 15 days. But that’s not where our story ends. 

 

Once Frank was stable and Doctors felt confident that he would recover, they began to explain the possible after effects that GBS Meningitis can cause - most of which would not become apparent until Frank was older. The after effects included vision and hearing loss, behavioural difficulties, cerebral palsy and epilepsy. We were told that we would be seen regularly for follow up appointments to check how Frank was recovering. 

 

The appointments began when Frank was around 7 weeks old. Initially Doctors and Physios seemed pleased with his progress but by the time he was around 12 weeks old it was clear that he was developmentally delayed. By the time he was 1 he had received a diagnosis of Cerebral Palsy and Epilepsy. 

 

Frank is now two. He is unable to sit, crawl, roll or speak. He does however have the biggest and most infectious grin you've ever seen. His laugh cannot fail to make you laugh along with him. He is the happiest, most easy going little boy who brings us so much joy. We are incredibly grateful that Frank is here with us and we can continue to make memories together. Life may not be exactly how we imagined it when we were awaiting his arrival but every day with Frank is a gift. 

 

 

 

Knowing that what Frank went through could have been easily avoidable can be difficult to accept. It's the reason that we continue to raise awareness of Group B Strep - so that families don't have to go through what we have, and remember we are the lucky ones - we got to bring our baby home. I will never understand why expectant mothers aren't at least told about it, let alone provided with a simple test which will determine whether you are a carrier. If you are aware that you are a carrier you will receive antibiotics in labour and your baby should be closely monitored for signs of the infection - which include: 

  • Grunting, noisy or laboured breathing

  • Be very sleepy and/or unresponsive

  • Inconsolable crying

  • Be unusually floppy

  • Not feeding well or not keeping milk down

  • Have a high or low temperature 

  • Changes in their skin colour (including blotchy skin)

  • An abnormally fast or slow heart rate or breathing rate

  • Low blood pressure (identified by tests done in hospital)

  • Low blood sugar (identified by tests done in hospital)

While the test is not provided on the NHS as standard, you can buy them privately from sites such as Strepelle and TDL Pathology and you will receive your test results via text message. It's important to remember that if you do test positive you musn't worry, it is a very, very common infection and the best thing is that you are now aware and can receive antibiotics in labour. 

 

For more information and support you can go to https://gbss.org.uk/

 

Author credit: Kate Rogers

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