Hydrocephalus awareness?!

[Mummyto4boys1122]

My 4 month old ds was diagnosed with hydrocephalus just over a week ago and iv come to realise there is barley any awareness on the condition :( Can't even really find anu blogs are anything, what is the best way to raise awareness other than re posting online, would love to do something

What is it you want to make people aware of? How to stop signs in their own child? Understanding what it is and how it impact others? Both? You need to think about who it is you want to know and what it is you want them to know.

Hi, check out SHINE and search spina bifida (which often goes hand in hand with hydrocephalus). There are lots of spina bifida/hydrocephalus blogs and Facebook groups. The spina bifida stuff may not be applicable to you but there's plenty of info on hydrocephalus.

Mainly on the condition and how it affects people one day it would be amazing if they was a better way to treat it other than a shunt that has a high rate of malfunction, I don't know really I'm still learning myself as he's just been diagnosed,

This is my opinions I feel free to ignore it. But if you are the poster I think you are then you have a very young baby and are still learning about your son’s newly diagnosed condition. Having a new born, especially one with a medical issue is all consuming. Spend the next year enjoying your baby and learning about his condition and then you can join up with a charity, run charity events, going on this morning or whatever else you are willing to do.

Fallgain, I think ur absolutely right, I do need to learn more, and I will take that on board thank you! 🙂

I meant it more from the perspective of be kind to yourself. A new baby even if it’s not your first is always hard work and a learning curve. Don’t over commit yourself and allow yourself to enjoy your son.