Jethro’s Journey

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Jethro was born at 39 weeks via elective c section, after an entirely healthy pregnancy. We had six wonderful weeks with him and his sister, as a family of four before the word hydrocephalus came catapulting into our vocabulary. At about five weeks old we had noticed his eyes looking a bit “funny” and only looking down – we later learned this was sunsetting eyes a huge symptom of hydrocephalus.

At his six week health visitor check his head was measured to have grown rather rapidly, from about the 25th percentile to the 75th, we were advised to see the GP. I first turned to Dr Google, who- when I typed in enlarged head and sunsetting eyes – immediately threw the word hydrocephalus at me. Realistically I should’ve panicked and run him straight to the hospital but my defences told me it was nothing and to wait and see the GP. So we did, who referred us for an urgent appointment with a paediatrician who in turn requested an urgent USS of his fontanelle. This took four weeks thanks to a lack of communication within the hospitals, eventually he was scanned and found to have “massive” hydrocephalus.

He was transferred to Birmingham Children’s Hospital and then had a VP shunt placed the very next day. Luckily he had a very uneventful recovery and we were home in 5 days. I assumed that that was it, surgery done and life could carry on as planned, however the shunt life isn’t an easy life. Jethro has developmental delays, he is now 3 and doesn’t talk, or communicate particularly easily (you have to know him really well to understand him), he also can only walk about ten steps before it becomes too much. He has a lot of autistic traits and I don’t know if he will ever be diagnosed as autistic because he has suffered a brain injury and it’ll be hard to prove if his delays come from his brain injury or autism.

This February he also went through his first shunt failure, when the tubing actually fractured and therefore wasn’t draining efficiently enough. That was quite an ordeal and took a lot of return trips to hospital to get him diagnosed properly. Following this he has just being diagnosed with absence seizures and we are currently getting further testing in a view to treating them. 

As the mum of a hydro warrior always expect the unexpected, fight like a Trojan and above all trust that mum gut (or dad or Carer). Life with a hydro warrior is unpredictable, terrifying and eye opening. For us it is also beautiful because the world is brighter with Jethro in it, he helps us appreciate all the small things and take joy in all the good days.

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