3 month old just been diagnosed with hydrocephalus

[Mummyto4boys1122]

Any other mamas out there with a little warrior
My son was diagnosed less than a week ago and I'm still a nervous wreck it's been the hardest week of my life! Hes had the shunt and healing well but all I can do is worry that something will happen again, I can't rest at all 😥

So sorry that you've had a shock with this @Mummyto4boys1122.

I don't have any experience but hopefully someone will be along soon

It’s a massive shock when it happens. The good news is they will monitor him very carefully and that will continue through his life. DS2 has hydrocephalus - VP shunt put in at 9 months and he’s now 12 years old. We’ve never had a problem with the shunt.

I know it feels overwhelming and awful at the moment but it does become one of those things which fade into the background of family life.

Thank you so much,
I'm constantly worried about shunt failure and infection, its all just overwhelming tbh, anselve does ur son have any issues with development ect

My DD was diagnosed with hydrocephalus at 9 weeks old. She is now nearly 16 and has just undergone her 4th shunt revision.
Shunt revisions are pot luck really. My DD’s shunt has tended to break after a growth spurt.
Hydrocephalus is scary for a parent. But the shunt operation is very common.
I was always worried that my DD wouldn’t come out of theatre ‘the same’ as when she went in. But she’s always bounced back quickly.
You will come to worship whatever neurosurgeon operates on your son. My daughter has had the same neurosurgeon her whole life and he is worshipped in our house.
Hydrocephalus is damage to the brain but not necessarily brain damage.
Make sure you get the support you need too.

My LO has hydrocephalus, diagnosed in pregnancy with op for a shunt at 8 weeks. Now 8 months and touch wood no issues yet, hitting milestones. Only issues we have found is the reaction of nurseries when trying to get childcare, but that's a whole other story

Shine can provide support and lots of helpful guides to help you talk to others about the condition. There is very little awareness.

My uncle had hydrocephalus. He was a lovely man. Sending healing energy to your son.

Congratulations on your new baby! I hope you're feeling okay about the news, it must be scary to hear.

DH has a friend, about 45, with hydrocephalus and she lives a fairly full life, with a part-time job and loads of friends to be out and about with. Sometimes if the weather is rainy she'll have a headache and she does have routine hospital appointments regularly but she's otherwise well.

I hope you are taking comfort from these messages. I would second the Shine recommendation. They have a lot of knowledge that will help you feel a bit more prepared, a bit more in control.

DS2 had bad luck really. He was premature which caused the hydrocephalus but he also has a rare chromosome disorder which is linked with dyslexia and autism. But you wouldn’t know any of this if you met him - he is funny and articulate with lots of friends, a bit of sunshine really.

You have to just take one step at a time. Learn about shunts and hydrocephalus, learn the signs for when there’s a problem. But you have to keep it in perspective (easy for me to say all these years on) because a shunt is an amazing thing. I am in awe of neurosurgeons, in awe that a bit of plastic can have such a profound effect on people’s lives.

OP our diagnosis was a little different, craniosynostosis, but LO had to have surgery at 16 weeks-ish and is now in a cranio helmet and is doing great. I know it feels so overwhelming at first but you will find that you become an "expert" on your child's diagnosis very quickly and it will all feel more manageable soon.

Thank you for all the messages :)
Tbh it's a massive shock :(i just feel constantly on edge and worried for my little boy, it's all happened quite quickly tbh and I still think I'm shocked tbh, we have a meeting tmorow with his neuro surgeon and his hydrocephalus nurse it's just alot to process I think,

Definitely and you’re allowed to be completely shocked. I felt numb, like it was too big to understand. But you will get to the other side and those feelings will fade. DS2 is convinced he’s a cyborg and takes it in his stride. You’re not there yet as it’s just happened. Maybe write down some questions before you see the docs and nurses - I always end up forgetting what I wanted to ask.