Gbs help needed

[Sarah188]

hi guys my 3 weeks old baby boy contractes gbs and spent 9 days in ICU...he then spent 6 weeks on the ward on antibiotic treatment...he has been diagnosed with cerebral atrophy....need some advice on what to expect....any other similar stories out there?

[GBSSadmin Partner Volunteer Group B Strep Support]

Hi Sarah188,

I'm so sorry to hear about your son's GBS infection, what a dreadful time that must have been for you all.

I'm afraid we don't hold much information about long-term problems caused by GBS infection, since any after effects tend to be more specific to the infection caused (e.g. meningitis, sepsis, etc), rather than to GBS itself.

If you have any concerns or questions about your baby’s care or expected long-term outcome, we'd suggest asking the the doctors or nurses caring for your son.

You might also want to get in touch with fellow charities Cerebra (w3.cerebra.org.uk/) or Child Brain Injury Trust (childbraininjurytrust.org.uk/), who may have more experience of cerebral atrophy.

Sorry to not be of more help.

Oliver

[Rach81]

Hi Sarah, our son had gbs infection leading to meningitis and sepsis at 2 weeks old and was left with ischaemic damage throughout his brain. He was not expected to be able to sit up let alone walk and we were told he would have learning difficulties. At 2 he astounded us all when he took his first steps and although receiving an autism diagnosis at 3 and remaining under many services at 4 (opthamology for delayed eye development, audiology for possible slight hearing loss on one side, OT for motor planning difficulties and sensory issues, endo for growth/weight issues) his journey has been nothing like the bleak picture that was painted by his neurologist the day we were asked to sit down in that dark little room some 4 and a half years ago. We had one consultant who was concerned with scans and stats and obsessed over the size of his head and another lovely lady who told us looking at these things was of little value. She had seen children with terrible scans and very good function and equally children with 'normal' scans but problems with function. So, yes the only way to find out is to let your son show you what he can do. It's difficult I know, 4 years on things are still unfolding for our son. But try not to get hung up on diagnosis or anxiously wait for every milestone. Enjoy your son, he will show you exactly what he can do and whatever that is it will be brilliant. I won't deny our son's struggles but he amazes us every day and although we all naturally want the easiest lives for our children he is truly brilliant just the way he is and your son will be too. Take care and love to you all x