I'm 33 weeks& found out my baby has fluid in the brain 23 MM which they have said is very severe and she will be very disabled, can there be hope? and she be okay? and not be as bad as they say? anyone else been through this?
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SaggingTits ·
16/01/2016 01:36
No experience of this but I hope someone who has comes along soon. You might get quicker replies posting in chat or even aibu.
Mummyof02 ·
16/01/2016 03:04
Hi riz,
I'm sorry to hear you are going through this , it can be very stressful to find out that your little one may have severe health risks/conditions. I know because my eldest little boy who's one now was born with a rare condition called a frontal nasal encephacele which is a brain defect he also had a mass of fluid build up because of his condition. And even though it was hard to think our little one was going to need a lot more support and medical assistance then other babies , there is help out there and they can do miracles now when it comes to dealing with disabilities and rare health conditions. with my little one they drained the fluid from his brain and put a shunt in which is something that stops fluid building up in the brain, he also had other various operations due to his condition but he's doing really well now in terms of his health and development and is catching up quick with other babies his age 
hope this gives you abit of reassurance and hope, sending big hugs xxx
goddessofsmallthings ·
16/01/2016 04:54
I'm sorry there's so much uncertainty clouding the birth of your little girl. Taya is a beautiful name and I'm sure she'll live up to it.
There's a wealth of information in this American parent's account of their experience of expecting, giving birth to, and nurturing a baby with hydrocephalaus, and although there's a lot to digest I hope it will be of help to you. fetalhydrocephalus.com/hydro/info-Congenital-Hydrocephalus.aspx
The section on Cord Blood may be of particular interest to you and if you are under the care of an Obstetric team at one of the more innovative teaching hospitals it may be that they are trialling this procedure, or will be willing to do so.
You may already have been made aware of the UK charity Shine who provide support to parents/carers of children with hyrdocephalus and spina bifida //www.shinecharity.org.uk/hydrocephalus/more-about-hydrocephalus
I don't want to give you false hope but doctors' prognoses have been proved wrong and it may be that Taya's condition is not as severe as the worst case scenario you have been prepared for.
Along with all of the mumsnetters and lurkers who read this thread, I'll hold you and Taya in my thoughts and look for your updates.
Newlywed123 ·
16/01/2016 10:09
Taya is a beautiful name! Nobody will know for sure until she is here unfortunately- No help whatsoever 
I know this is different circumstances, but my MIL gave birth to her first. Doctors were talking so she new something was wrong but wasn't told until over a week after she had her. She had Downsyndrome. My MIL was in her early 20's when she had her. They've been through a lot together and she has a few problems and had to have open heart surgery at a few months old! My MIL went on to have another child 2 years after having her first. Her husband ended up leaving a few years later and she raised both children alone! I've NEVER seen a a mother and daughters relationship as close as theres!
Cuppachaplz ·
16/01/2016 21:40
Sorry you're going through this op 
Ds2 was diagnosed with ventriculomegaly and hydrocephalus at a similar stage.
We were told that he would probably be born in status, would be severely disabled, may be stillbirn etc. Etc. Etc.
We had an MRI in uteri, several other tests.
He was born fine, breast fed himself straight away and despite being 5w early was home in 3d. He never needed the scbu bed they expected, has never had a seizure nor any neurological signs. He is still being monitored closely but is happy and well.
He goes have DS, but apparently thus us totally unrelated.
If you want to pm, please do xxx
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