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fluid in the brain 33 weeks

(20 Posts)
riz90 Sat 16-Jan-16 01:32:17

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?

SaggingTits Sat 16-Jan-16 01:36:39

No experience of this but I hope someone who has comes along soon. You might get quicker replies posting in chat or even aibu.
flowers

SnuffleGruntSnorter Sat 16-Jan-16 01:37:40

Oh riz, I'm really sorry to hear this. We're there concerns before? Is that why you're having a scan now? What did the obstetrician say?

In my (very limited) experience it's impossible to say for sure until your little one is here.

It just be so very worrying for you. I hope you have lots of real life support?

Big hug

SnuffleGruntSnorter Sat 16-Jan-16 01:38:42

Please forgive typos, am multitasking but didn't want to read and run

riz90 Sat 16-Jan-16 01:45:25

no concerns before, had a growth scan this week as my bump was measured small and went for the scan and found fluid in the brain, was sent to see specialists and been to do tests, have a lot of support from my partner, it's our first child so very heartbroken..

SnuffleGruntSnorter Sat 16-Jan-16 01:53:40

I'm glad you have a supportive partner. Lean on each other, it'll probably be very testing for your relationship - all babies are, but remember to support each other as much as you can.

It's good that you've been to see a specialist already. Are you waiting for test results now?

The uncertainty is often the worst part about these situations which I suppose is why you're posting here? I wish there was something I could do xxxx

riz90 Sat 16-Jan-16 01:58:25

yes very testing but luckily we both have the same thoughts and want to carry on with the pregnancy and just pray for the best..
yes had a fetal Mri scan to find out what has been damaged in the brain find out next week, just a waiting game..
First child and we both are young 24 and 25 so very scary thinking about raising a disabled child

SnuffleGruntSnorter Sat 16-Jan-16 02:05:21

I'm glad you're both on the same page.

Waiting for results is difficult, I suppose it'll feel like a very long week for you both. At least it's some time to think and start to come to terms with it.

It must have been a terrible shock for you.

riz90 Sat 16-Jan-16 02:07:33

yes very draining week for us just hope these tests are a better outcome
yes it was never thought this would happen, specially when you read things like this about other people then it happens to you

SnuffleGruntSnorter Sat 16-Jan-16 02:12:34

I know, the chances always seem so small, and when you're toung and healthy there feels like no reason to believe your baby won't be either. These things happen to other people, or people on the tv, not you.

I'm just so sorry. I wish it wasn't happening to you.

riz90 Sat 16-Jan-16 02:14:18

I know it's just crazy 😰
aw thank you, either way she's my little girl and I love her no matter what

SnuffleGruntSnorter Sat 16-Jan-16 02:17:52

Aww a girl! Congratulations! Does she have a name? I'm sure you'll be an excellent mother to her, whatever her needs you'll find a way to meet them. It sounds like she already has plenty of love and that's what babies need the most

riz90 Sat 16-Jan-16 02:20:55

thank you and her name is taya ☺️
yes won't know her needs till she's here

Out2pasture Sat 16-Jan-16 03:01:33

posted on your other thread. positive thoughts for you and the new little one smile

Mummyof02 Sat 16-Jan-16 03:04:48

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 smile hope this gives you abit of reassurance and hope, sending big hugs xxx

goddessofsmallthings Sat 16-Jan-16 04:54:28

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.

flowers 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 Sat 16-Jan-16 10:09:05

Taya is a beautiful name! Nobody will know for sure until she is here unfortunately- No help whatsoever sad

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!

riz90 Sat 16-Jan-16 10:13:57

Thank you all I feel a lot better in myself, I find out results from mri scan next week and will keep you updated, they can do amazing things now and I know babies are stronger than we think just pray she pulls through

Cuppachaplz Sat 16-Jan-16 21:40:09

Sorry you're going through this op thanksthanksthanks

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 thanksthanks

zannyminxoxox Sun 17-Jan-16 11:52:22

Bless you hun flowers

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