Hydrocephalus at 20 week scan

[Charrun]

We had our 20 week scan quite recently which showed fluid on the brain.
It's 16mm and bilateral which tips us into the severe range.
We have an MRI booked in next week to have a better look at what's causing it and what damage might have been done.
I contacted shine but unfortunately they don't support Scotland. And the Scottish version haven't contacted me back yet.
I'd really like to know if anyone here has gone through the same thing. This is terrifying for us.

I don't have any personal experience but offering a hand hold.
MRI is going to be more accurate than the ultrasound, so it's subject to change,by how much I don't know. Have they said anything else about whether anything else looks off like structures of the brain?
It's going to be an awful wait, but I'd encourage you to keep talking to your partner about it. You might find it helpful to write down your questions over the next few days, all your fears etc.
Crossing my fingers and toes for you

Thanks for the encouragement. The ultrasound didn't show up any damage or obvious problems, but that could all change when we get the MRI results.
To be honest partner and I have not had a sit down to discuss how we feel about possible results, MIL has been visiting which has been really difficult.

@Charrun yes that's completely understandable, I didn't want to be blunt or hurtful earlier but only you two know if you can continue this pregnancy if the MRI confirms the worst. You need this to happen and answers as to the implications of it all but I appreciate it's an impossible situation and an awful decision especially this far along. Is Mil being supportive? You need time together right now to process so if she isn't maybe she could come back at another time x

@Likethestarsabove547 not blunt at all. I appreciate you taking the time to reply.

@Charrun how are you doing now? Do you have a date for your MRI?

Hi OP, hope you're doing okay. I have experienced something similar myself, though in my son's case there were further problems other then the fluid, so slightly different.
There's a Facebook page called 'ventriculomegaly' and that was a saving grace for me reading those stories. There's babies on the with ventricles measuring in the 40s, 50s and 60s and doing great.
I'm happy for you to reach out got a chat if you need to, sending love x

@Littlelighthouse thank you for your reply and sorry for the late response notification went to my promotions folder 🤔
I've just applied to join that group thanks.
We had the results of the MRI, baby's brain is so squashed, it really was distressing to see. The neurologist was very nice but wouldn't be pinned down on any outcome.
How did you deal with the not knowing?

@Charrun I'm so sorry to hear how distressing the MRI was for you.
Our son's issues weren't actually hydrocephalus in the end, they initially thought it was because of the ventriculomegaly and fluid, but it wasn't that.
Have you got follow up appointments/scans etc?

I was that baby at 20 weeks. My parents had further scans etc, to see whether I had Spina Bifida as well.
I was born at full term with Hydrocephalus. They considered inserting a shunt when I was a baby, but decided against it. I was monitored by the neuro consultant for the first 9 years of my life, until mercifully I got a new one, who said I needed to be operated on - I had key whole surgery to create another route for the fluid. My quality of life improved tenfold. Unfortunately from an emotional health perspective, because I was untreated for so long, my head grew to a larger size than my peers and I was bullied horrendously for it.
I was signed off by neurology after my operation, and have grown into a fully functional (relatively!) normal adult, who has had a child of my own (who doesn't have Hydrocephalus).
I asked my mum, why she didn't get rid of (at a very low point in my life) and she was unable to answer.
Your baby has every chance of being a well, fully functioning human being. I hope you and your baby get the right support and treatment.

@Charrun

I have some experience of this condition with a friend and her now adult child

Only you and your partner can decide if you will continue which is the hardest decision ever.

I'm not going to lie my friends life for 17 years has been very very hard not just with the physical side of caring but the constant appointments for things,admin go care help and all things personal etc etc.

My friend chose not to have anymore children due to the care and time/attention and patience needed for her disabled child and it was definitely the right decision from a practical place but devastating from her personal point of view.

If you would like to ask any questions feel free to pm me.