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Hydrocephalus Awareness Week 2020 - Jethro

12th February 2020


Jethro's Story...

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

In 2016 Jethro arrived, at 39 weeks following a complication free pregnancy. The first five weeks of his life were a dream but then we started noticing his eyes looking down a lot.

At his six week check it was noted that his head circumference had increased significantly and we were referred for a scan. At 10 weeks old Jethro was diagnosed with ‘massive’ hydrocephalus and had a VP shunt placed. As parents this was the worst case scenario, our son having an incurable brain condition likely to require multiple brain surgeries in the future. The best we hoped for was for Jethro to develop normally alongside his peers and to remain surgery free.

For the next six months or so we lived in a bubble of this being the truth, as he remained healthy and meeting milestones only marginally delayed. Then by the time he turned one it transpired that he was starting to fall a little behind his peers, happy but delayed. His hydrocephalus remained well managed for about two an a half years but at the age of 3 Jethro experienced his first shunt failure. It wasn’t diagnosed straight away and we spent about three weeks in and out of hospital before the shunt failure was picked up on. We were all exhausted, fed up and in shock that the shunt had failed, it had physically split in the distal part of the tubing.

That’s the thing with hydrocephalus it doesn’t just affect one person, but a whole family.

Our daughter feels the effects when her brother is in hospital, we lose out on work days and money paying for hospital life. Jethro's shunt has failed two more times, within six weeks of each other. You become more accustomed to the symptoms and the process and even the feelings that come along with it all. It doesn’t get easier but you grow accustomed to it all.

Jethro remains developmentally delayed, and the cause for this may never be known, and that’s a hard pill to swallow. He is happy though almost every single day, and really that’s all we ask for.

Hydrocephalus brought with it a lot of fear, anxiety and uncertainty but in its own way brought happiness and joy in places you never thought you’d find it. 

Shine have been supporting us since the beginning of Jethro's hydrocephalus journey.

They make regular contact and supply resources like shunt alert cards, making transitions to nursery and school easier.


Watch his video here.


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