Hydrocephalus

[rz2022]

Hi I am 18 weeks pregnant and have been told baby has fluid around its brain.l, hydrocephalus. I am being referred to a neurologist next week but am out of my mind with worry. Has anyone had experience with this? I would appreciate yer experiences so I have more knowledge and am more prepared for next week. Thanks

Would really appreciate if someone has any insight or positive stories for me this week is dragging to see a specialist

A friend of mine has hydrocephalus, she is in her mid 20's, it's not a life limiting illness but the treatments can be agony for her.

For her it involves regular lumb punctures and having the excess fluid drained. There are easier treatments if you have a shunt fitted. But that carries its own risks and she has opted not to have it done. Someone I knew at school had the shunt and never had an issue

Has your consultant given you any info?

Thanks for your reply.
I wasn't told how much fluid although I think she said there was alot just was in shock so didn't take it all in. She said there doesn't seem to be any issue with the baby's spine. Have an appointment with neurologist on Monday but the wait it's horrible. I presume they will monitor the levels and weigh the risks of preterm delivery to brain damage.

The important thing is they know about it, they will be able to monitor and manage it and hopefully intervene if necessary.

As crap as it sounds, try not to worry til you know more and please don't scare yourself on Google!!

Thank you think I need just to be hopeful and positive instead of thinking the worst. I had never heard of hydrocephalus before. I know I was told to stay away from Google but easier said than done

My boy had cysts and hydrocephalus. His general health is good though he has some disabilities (his hands don't work so well and working memory not great) but he is intelligent and funny and now a 6 foot 20 yr old. Usually a shunt is used to keep the fluid down but he wasn't suitable. Had neurosurgery twice as a baby. It's not been easy but it has not turned out to be what they predicted before birth which was very negative. Good luck it's a scary situation

I was born with this, it arrested on it's own when I was about 18 months.

I'm very bright and healthy with godawful hand to eye co-ordination and some degree of neurodiversity. 100 percent normal life, great job, friends, kids etc.

I think it honestly all depends on how it presents itself i.e how severe it is. The positive is they have caught it early and can monitor the situation and recommended the right treatment plan for your baby.

I am an adult with hydrocephalus and have managed to live a relatively normal life. When I was about 2, my parents were advised around shunts but decided against it as it was a risky procedure for me. I was monitored on an annual basis until I was about 8 years old and then I was discharged. I both learnt to walk and talk a lot later than others (around 2 years old)

As an adult, my balance is shockingly bad so I can't handle things like Go Ape or Rollercoasters for example, and my hand eye coordination is rubbish for catching stuff when people throw things. But other than that, I would say I lead a pretty normal life.

I'm also currently pregnant and other than not being able to have any form of spinal/epidural procedure, I have had a pretty normal pregnancy so far thankfully.

I will say not to give you false hope but the consultant who saw me said I was a rare case in my presentation of hydrocephalus. But I'm sure it's not all doom and gloom like Google suggests either!

Another thing and I will then stop waffling...a lot of GPs, doctors etc. I have come across have heard of the condition which I can say is a good thing for future treatment. I have another rare condition which no one has ever heard of and I constantly have to explain what it is and never know whether I'm getting the right treatment

Thoughts are with you. Stay positive. They've caught it early and there are lots of things they can do nowadays treatment wise that they never had 30 years ago when I was a baby. Best of luck to you and your family :)

My son has hydro, but this was due to a brain bleed when he was a few days old and ended with a rough 1st year of life with shunt revisions ( my sons hydro is complicated)

It will all depend on how the hydro presents, they may do a watch and wait, place a shunt or ventriculostomy

Have a look on the shine website

It's hard to say but plz try not to worry until you have seen the neuro and they can give u a plan of action,

Kids are amazing at how the copy and adapt. I was always amazed at how quick my son bounced back from his shunt operations

Thanks so much for sharing all of your experiences with hydrocephalus. it really helps me and my partner. I think we are just so anxious and worried about our appointment next week and the days feel like the days are dragging and we are left on limbo. It really does give me hope hearing your stories ☺️

As an alternative experience, my son had extra fluid at the front of his brain - after a year of MRIs, eye nerve checks, a CT Scan etc, the conclusion was that it wasn't causing pressure on the brain or development at all, it pushed his skull out instead. His head grew huge, and the front was very uneven, so it meant walking took ages and his balance wasn't great, but now apart from no tops fitting over his head, you wouldn't know the difference. We were under a consultant for 3 years, then it absorbed it's self as he grew

Was it found in pregnancy ultrasound? If so, at what stage and was it monitored? Did he have any learning difficulties as a result or any other difficulties?

Hi just said I'd update incase other moms are frantically looking online for answers like me I had visit with neurologist who took bloods and a sample of amniotic fluid to do more tests as to why baby has hydrocephalus. I will be waiting for results to see if there is any other anomolies, they have ruled out spina bifida. Baby has alot of fluid and doctor reckon it's caused by aqueductal stenosis. They will monitor me for increased pressure on the baby's brain. It's a scary time and is going to be a long stressful pregnancy. Has anyone been in similar situation?

Hi, just found your post. I’m in a very similar situation. What was your outcome if you don’t mind me asking?