hydrocephalus

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I won't bore you with medical details.   There are far better places to get those.   We found www.asbah.org   www.hydrocephalus.org  and www.hydroassoc.org  gave plenty of information in a way we could easily understand.   People of my generation knew hydrocephalus as "water on the brain" and in my youth only children had that because, quite simply, they did not live to become adults.   Their heads grew larger to accommodate the fluid while they were children, but when they stopped growing their heads stopped growing too and the pressure increased killing them.   Now though it's very different.

As soon as Ryan was fit enough (by July) he was moved to another hospital, this time in Plymouth and had an operation to fit a shunt.   In his case this drains the fluid away from his brain and down into his abdomen and so out of his body.   There are different types of shunt, but that is the type best for Ryan.   Of course we worried.   He was such a tiny thing still and a general anesthetic is dangerous even for a fit adult.  Also, I have to admit I didn't really like the idea of them cutting into his skull and "messing" with his brain; but when you think of the alternative you just have to have faith in the skill of the neurosurgeons.   When I had the phone call at work to say that he had come through it OK I went outside walked around and cried.   The people I worked with were great, they just waited and then made me a cup of coffee and sat talking to me.   We all need this at times.

Ryan moved back to Treliske again.   We noticed a difference immediately.   His head was not swelling any more, in fact it even went down a bit.   Not many people now can see anything wrong with the shape or size of his head, his hair also helps to hide it, but anyone with a hydrocephalic child can recognize it.  

No one could tell us for certain how much damage had been done to his brain, either by being born so prematurely or by the pressure exerted by the fluid.   He was not paralyzed, that much was obvious, but that was all we could be sure of.   It was enough.

Ryan came home from hospital at the end of August - he was just over four months old and weighed 5lb.   Between then and his first birthday he spent more time in hospital than out.   He had his shunt replaced three times in that period.   He has had two more since.  So he is on his 5th now.   Each time we hope that it will not happen again.   He has horseshoe shaped scars on his head and scars on his stomach from the shunts.   His left leg is scared from the drips and IV lines.   BUT he is happy so we are.

I've added another page to this site USEFUL LINKS   it's just a page of the sites for organizations we have found very useful.  

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