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Original poster

Developmental Delay/Hydrocephalus, anyone?

59 replies

Arabica · 13/06/2006 13:26

Hello!
I'm 33 wks pg with a baby who's currently got too much fluid on its brain (ventriculomegaly). Have been told that because the amount of fluid, and that fact that it's increasing, baby is highly likely to need a shunt operation straight after birth and there is also a 'significant risk' of developmental delay.
Just wondered if there is anyone who's been in a similar situation and/or who can tell me how you were able to cope with your newborn being whisked off for tests and intrusive procedures straight after birth (am dreading it).
I'll know for sure whether baby neds the op at 36wks when I have yet another scan, but I want to prepare myself, preferably by hearing from someone who's been there, and the hydrocephalus website haven't got back to me.
Thanks for reading this--sorry it's turned into a thesis.

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Original poster
Arabica · 04/07/2006 11:56

Sorry to hear there is still so much uncertainty, emkana. I'm just so looking forward to not being pregnant. It'll be easier for DH, too, once the baby's arrived and he can bond with it. It's hard for him to do so at the moment so I feel like I'm dealing with it all mostly by myself.

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emkana · 04/07/2006 11:57

That's the same for me as well. It still feels that way now to some extent unfortunately, because dh is a bit in denial and just convinced that ds is okay. I so wish I could believe it as much as he does.

merlot · 04/07/2006 20:54

Just wanted to post another positive story:-

a neighbour of mine had a dd with fluid on the brain - needed a shunt and her head size is still large, but she is doing absolutely fine and is in mainstream school

My son has a rare chromosome disorder and developmental delay as a result. Its a roller coaster ride and life is not how I would have planned, but there are huge ups along with the lows. Take Care and will be thinking of you tomorrow. Good Luck xx

sugarfree · 04/07/2006 21:06

Will be thinking of you tomorrow Arabica.

Original poster
Arabica · 04/07/2006 22:27

Thanks everyone. I feel a bit better. I'm still dreading the scan but at least I don't have so long to wait.

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Blu · 05/07/2006 12:34

Thinking of you today, Arabica.

When I had DS at King's anyone who had had a cs automatically got first call on a single room - but that was in the old maternity ward - I gather the new one is much much nicer, anyway.

emkana · 05/07/2006 19:07

Arabica - I really, really hope you had some good news today.

tamum · 05/07/2006 20:28

I've only just caught up with this, but I am hoping for good news too Arabica.
xx

Marina · 05/07/2006 21:15

Fingers crossed for you Arabica XXX

mrsdarcy · 05/07/2006 22:18

Thinking of you Arabica.x

Original poster
Arabica · 05/07/2006 22:50

Yippee! V good news. Fluid levels still very high, but head circumference normal. So, no need to have the baby early and no need to recommend an immediate shunt. I can have my C-section at 39wks as planned. Baby will need to go to neonatal dept for thorough investigation (to see if fluid levels/head circumference has increased and also see if any new problems have materialised that the MRI didn't see), but I've been shown around the unit and reassured that DH can be there all the time with the baby until I am sufficiently recovered to come too. Because there is no abnormality detected on the brain save for the fluid they think there will be no probs with breathing etc and that means I will be able to hold the baby before it's whisked off.
Consultant says he thinks baby will be cloesly monitored for developmental delay, but his gut feeling is they'll find nothing wrong and after a year or so, I will be left in peace. A bit like your experience, MrsD!

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sugarfree · 05/07/2006 22:51

Arabica! That's WONDERFUL news! I'm so pleased for you.

hoxtonchick · 05/07/2006 22:57

oh fantastic arabica . have you seen our meet up thread here

Blu · 05/07/2006 23:28

Top Result!
Arabica, I am so very very pleased.

So will you still have the baby in King's? And is the 27th 39 weeks, or is it put back now?

Oooh, this is a relief, isn't it?

Original poster
Arabica · 05/07/2006 23:37

No Blu, no King's for me! I can go to my local hospital, the Homerton: if the baby needs a shunt it will go to GOSH, they are almost 100% sure that the operation (if it is needed at all) can be delayed until I am sufficiently recovered from my c/s to be there with the baby.

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CristinaTheAstonishing · 05/07/2006 23:39

Sounds like good news, Arabica. I hope all goes well with the delivery and that the baby is healthy.

Blu · 05/07/2006 23:43

That all sounds very good.

I was just itching to be able to come over to King's with a nice restorative salad and a cake -I live and work very close

Original poster
Arabica · 05/07/2006 23:50

Blu, how nice of you! Maybe we'll meet in real life one day anyway.

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Original poster
Arabica · 05/07/2006 23:51

Thanks Cristina too!

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emkana · 06/07/2006 08:24

Great news Arabica - I'm so very pleased for you!

mrsdarcy · 06/07/2006 10:34

Fantastic news Arabica. I'm so pleased for you. Yes, I bet you'll have the most investigated but most normal and lovely baby in the world, just like me

Marina · 06/07/2006 12:03

Excellent news Arabica - so happy that you've had some of your worries allayed already . XXX

merlot · 06/07/2006 12:34

Wonderful news Arabica

emkana · 06/07/2006 13:56

Arabica - just spotted you posting. How big are the ventricles now, I was wondering?

Original poster
Arabica · 06/07/2006 14:10

I don't know--they forgot to give me the print-out of the scan result. 15mm is 'severe' but I think they're well over 20 if not 30?

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