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Hydrocephalis

Hi there,
I'm Rosa and as well as having a daughter who is 11 months old, I'm also 14 weeks pregnant. At my 12 week scan the baby's measurements were coming up a bit out so we had to go back yesterday for another and we were told that there was quite a lot of fluid on the baby's brain which was confirmed as hydrocephalis. We are to go see a specialist next week to see if can see the extent of this and if there are any other, often associated conditions such as downs syndrome or spina bifada.
Just wondered if anyone is familar with this or have had experiences? I don't want to start going on google and scaring myself until we know what we are looking at really but I love the support network here in general so thuoght might be someone in same boat.
Thanks for listening and hope you're all well x

Replies

  • Hi, i dont have much info, as havent been through it, but have a freind who has, and i noticed you had not had any relpys.

    Her baby had a simialr thing, fluid on the brain, but it wasnt picked up until the 20 weeks scan. Unfortunatly she was told a lot of info about possible still birth or premature infant death, and some family and freinds encouarged her to consider an abortion as i think her situation was very severe, however her little boy survived, and is now nearly 1. He does have some associated problems, for example he has cerabal palsy and they suspect some hearing loss, however in all other respects he is well and they love him to peices.

    I hope this hasnt upset you, but i guess if you google you will find many other stories and examples.

    Good luck.

  • hi, ihavn't been through it myself but i have worked with a little boy who has it since he was 9 months old.
    although his development has been a little delayed in some areas , he has exceeded expectations and managed to walk by 18months (doctors said he may never), he is developing well in most areas for his age (28months) with his language being a little delayed. his mum accessed as much support as possible which obviosuly helped.
    again, hope this hasnt upset.
    good luck xx
  • Hi
    Was on for a separate reason and noticed my post had replies- thank you for taking the time image Unfortunately the hydrocephalus was just tip of the problems, as baby had holoprosencephaly (where brain doesn't fully form) and triploidy and I lost him at 18 weeks.
    I'm now 11 weeks pregnant again and will know next week how that's going. It's weird reading others post about how upset they are at triple tests etc coming back high risk when oh and I will just be happy to have a baby but then we've a different experience and therefore perspective on things.
    Thank you again for you replies and best of luck x
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