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Original poster

Too Much Fluid on Brain

3 replies

Lostandlonleymama · 15/05/2025 11:35

Hello, I’m wondering if anyone can help?

I had my 20 week scan and the babies got too much fluid on the brain. The measurement is millimetres over what’s normal so it’s not a huge amount but it’s still a concern and only 3 in 1000 babies have this. Some babies go onto live healthy normal lives, some babies have learning difficulties and some babies are born with Down syndrome. If the fluid continues some babies dont make it.

I have a medical scan booked for Monday and they’ll be able look at the baby in more depth and have a comparison measurement on the brain fluid. It’s measuring at 10.6 anything over 10 is abnormal. If it’s measuring under 10 on Monday I’ll have another couple of weekly scans to keep an eye on the fluid.

There’s a couple of infections that could cause fluid so I’ve had my bloods done today to rule out those infections. I’ve also been offered the amniocentesis test but at only 20 weeks and this comes with risks which I’m not willing to take so early on.

I’m just looking for some advice from others who have been in the same position and had babies and what was their outcome. Thanks

OP posts:
Deanthebean · 15/05/2025 19:39

Hi I'm a now adult ( 31) born with ventricularmegulay and I still have enlarged ventricles and too much fluid. I don't have learning difficulties or anything like that however I'm on lifelong medication to keep the fluid at an acceptable level to prevent hydrocephalus - I do get debilitating headaches, I have paplideoma and have idiopathic hypertension but nothing "too" bad.
I have other physical and mental health conditions not relating directly to that.

Original poster
Lostandlonleymama · 15/05/2025 19:57

In reply to Deanthebean, thank you so much for your reply. This is very reassuring to hear, I keep thinking the worst case scenario and to hear of someone who was born with the ventricularmegulay and has lived a normal life with no side effects is amazing news. I really needed to hear this. Thank you from the bottom of my heart and I hope you continue to live a long and healthy life 🥰

OP posts:
AnxiousD · 19/06/2025 01:01

Lostandlonleymama · 15/05/2025 11:35

Hello, I’m wondering if anyone can help?

I had my 20 week scan and the babies got too much fluid on the brain. The measurement is millimetres over what’s normal so it’s not a huge amount but it’s still a concern and only 3 in 1000 babies have this. Some babies go onto live healthy normal lives, some babies have learning difficulties and some babies are born with Down syndrome. If the fluid continues some babies dont make it.

I have a medical scan booked for Monday and they’ll be able look at the baby in more depth and have a comparison measurement on the brain fluid. It’s measuring at 10.6 anything over 10 is abnormal. If it’s measuring under 10 on Monday I’ll have another couple of weekly scans to keep an eye on the fluid.

There’s a couple of infections that could cause fluid so I’ve had my bloods done today to rule out those infections. I’ve also been offered the amniocentesis test but at only 20 weeks and this comes with risks which I’m not willing to take so early on.

I’m just looking for some advice from others who have been in the same position and had babies and what was their outcome. Thanks

Hello
I've found your post by accident and I'm pleased I did. I went through this with my DS who is now 4yrs old. It's terrifying not knowing what to expect and I feel for you. I'm happy to chat privately if you want to.
I hope your last appointment was helpful.
Please reach out if you want to talk.

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