Your stories

Hydrocephalus Awareness Week 2020 - Georgie

14th February 2020


Georgie's Story...

Hydrocephalus is not predictable -
take each day as it comes.

At what was only meant to be the 20 week routine appointment where you find out the amazing news of what the gender was going to be, there was a split second when you know somethings wrong. The lady who scanned me told me she had to go and speak to someone and that she would be back. We felt like we were floating. We walked to a room which I can only describe as a death room, where you get told the worst news. That is where our journey started.

We were told our baby had hydrocephalus and spina bifida. Once she was born she had a procedure to close her back at a week old.

Georgie's first shunt was fitted at a month old but it made a hole in her bowel which led to her being in ICU a few days later on life support.

She then had an EVD (external ventricular drain) fitted while she had the infection in her brain. The next few weeks were nerve-racking... she got sepsis and e-coli.

3 weeks later a new shunt was fitted and she’s not had a problem since (touch wood) my hydrocephalus and spina bifida warrior you amaze me every second of the day! Always trust your instinct.


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