Monday, 30 October 2017

Meningitis and Hydrocephalus.

Today's assessment was on of the most amazing we have hosted.  It was with a 20 month old little boy and his family. He has been on the programme for 16 months and this was his fourth assessment. 

His background is a complex one.  In his Mum's own words in her first email to me.

"My identical twin boys were born 8/3/2016, 12 weeks early. ------ had fluid on the brain, a brain bleed on both sides, ventriculitis, and both twins contracted ecoli bacterial meningitis at 8 days old. ------- nearly died, he was having bad seizures, so much that his body was jerking off the bed (------- wasn't as sick) we were told there would be long term effects of this meningitis as he was so sick.

Unfortunately ------ got meningitis another TWO times. He's had an MRI which showed extensive brain damage and unfortunately has had to have a shunt fitted this week as the third bout of meningitis finally cleared up and he was well enough for surgery. The hydrocephalus has been very severe and neurosurgeon mentioned more brain damage since the last MRI.

I got talking to a mum of a little baby called ------- from York last night, we are at Leeds hospital together. She mentioned Snowdrop and I've been reading your website.
------- still not been discharged from hospital and yesterday started twitching down one side of his body again which he always did everytime he had meningitis, but part of me wonders if it's cerebral palsy or from the brain damage. We are waiting for neurology to come review him. But the hospital aren't being very open about his brain damage as I understand they can't say how it's going to effect him, but there is something clearly wrong. We don't even know if he can see or hear. He just states vacantly. The hospital describe him as a very angry as unsettled baby, he settled yesterday when I put his twin in his cot with him and actually looked directly at him.

We don't think we would be able to get to Devon having twins and a four year old. But we are very interested in the snowdrop programme for ------. I just wondered if you could advise me as to what to do next?

I know ------- is a very complex case but that's the basics of his history in his short 13 week life so far!"

In short, he was in a sorry state with a prognosis which was savage, the little one was going nowhere. Today, after 16 months on the programme, he walked into the assessment room and is at age level in every area of development. In fact today I graduated him from the programme, - he no longer really needs it! Of course we will keep a 'monitoring eye' on his progress, just in case an issue raises it's head, but I'm sure it won't. Not a bad start to the week! Well done to mum, dad, big sister and twin brother, - together we rescued him!