August 2016 my beautiful little baby boy went for a routine MRI, this was to check this was to check everything was ok due to him being born early at 31 weeks and his first 3 months were touch and go.
We had expected it to be an in and out appointmen…IT WASN’T!
Before he had come around from the sedation the doctors came into the bay, pulled around the ‘sound proof curtain’ and delivered the news that my tiny baby boy had a huge build up of fluid on his brain.
A blow we were not prepared for! How do you cope with being told that the tiny baby laying in front of you has something seriously wrong with him, a baby wh no chance to live.
We had 5 months of calm our baby boy was a perfect addition to our little family and his big sisters doted on him and then it’s like everything around you shatters.
We had to prepare ourselves to watch our baby face something we knew nothing about, we had to tell our young daughters that their much-loved baby brother had a poorly head and the doctors had to make him all better, they were too young to understand but I could see they were worried.
The next day he was taken to Addenbrooks where he would spend nearly a month!
We were presented with the choice between a shunt or ETV (endosopic third ventriculostomy) a hard decision and we followed what we thought would be the best long-term solution along side the advice from his neurosurgeon.
After 3 and a half hours we got the call that our tiny baby boy was out of brain surgery.
The ETV had failed he now had a bleed on the brain, seeing him laying there with a tube coming out of his head and blood filling up the pot that it was attached was absolutely heart breaking, if I could have swapped places with him I would have.
Our daughters were amazing throughout all of this, we didn’t want to scare them and let them see their little brother with a tube coming out of his head and them not being able to pick him up but they got tearful not having him at home with them, they had moments of being sad but they kept us ‘distracted’ and helped us to keep going forward.
Our little fighter had to have an external drain to relieve the pressure and to allow the blood to clear, brain surgery 2 was 9 days into this to replace the tube and reduce the risk of infection.
It took 3 weeks for the blood to clear and then it was time for his 3rd surgery to place his shunt, he was home the next evening!!!
The shunt drains the fluid from his brain to his abdomen.
To look at you would never know he had it, it just means we have to be extra cautious with his head and any type of hit to the head could end up with him back in hospital for more surgery.
When he is poorly or sick it puts us all on edge as not only is it horrible seeing your baby ill but sickness is also a symptom of a malfunction.
As of August 2016 our boy has hydrocephalus, a chiari malfunction (the route cause of hydrocephalus)and epilepsy.. these join a list of problems he’s had to face and continues to.
But he is our little superhero! He’s battled a lot and has come such a long way.
He is always happy and such a character, your typical boy who loves cars, dinosaurs, paw patrol and being on the move non stop.
Shunts are far more common than I ever realised and they save lives, I thank my lucky stars every day for the person who invented the shunt without it our boy would not be with us today.