Developmental Delay/Hydrocephalus, anyone?

[Arabica]

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.

FWIW Arabica my exp's younger brother was born with severe hydrocephalus and has needed a shunt all his life (he is now 20)
He was diagnosed as unlikely to live, and with severe retardation at 6 wks old.
His mother failed to agree, took him to her own specialists - he had serious visual impairment - tunnel vision/legally blind.
He had lots of help and amde it through a very good academic secondary school - not stunning marks but better than alarge amount of kids with no such issues.
He has had computers adapted with speech recognition software and has done a tertiary degree in computers and now works full time, he does live at home, his mum remains over protective which I think he likes.

I really feel for you, it is so hard not knowing.
My dd was born with a rare genetic condition - we had no idea until she was born.
I cannot imagine what state I would have been in had I known earlier.
Good luck and I hope you get positive news xx

Hi Arabica! I hope you're okay.

I don't know if you know that lou33 who posts on here has a dd with hydrocephalus? I'm not sure whether she knew before birth. Her dd didn't need a shunt and is doing well now - I think she's about 12 now.

Maybe search for messages by her with key words hydrocephalus and/or shunt, or try and search her out (or she might find you!).

Good luck and lots of love
emkana XXX

I think Lou33's daughter didn't walk till she was 2 but had caught up with her peers by the time she went to school at 5, and is fine now aged 12 or 13. I think I am right in saying that she got a scholarship when she was 7.

Hi Arabica. Not quite what you wanted, but it turns out I had hydrocephalus as an unborn baby. Which resolved itself before birth - drained away all on its own. Surgeon told me this is much more common than you'd expect - because we aren't all routinely brain scanned, we just don't know what's gone on. But when you do scan people for whatever reason, you find a much higher number than you'd expect coincidentally have evidence of old hydrocephalus.

I found out because I had to have a brain scan after I suddenly developed epilepsy out of the blue aged 29 – but it isn't related, it's just one of those odd things they find about your body when they look. Like discovering I have a retroverted uterus when I went for my first pregnancy scan.

Hope that is reassuring - I've got a degree and professional qualifications, am married with a ds, so it hasn't held me back as far as I can see!

Hi Arabica. Not quite what you wanted, but it turns out I had hydrocephalus as an unborn baby. Which resolved itself before birth - drained away all on its own. Surgeon told me this is much more common than you'd expect - because we aren't all routinely brain scanned, we just don't know what's gone on. But when you do scan people for whatever reason, you find a much higher number than you'd expect coincidentally have evidence of old hydrocephalus.

I found out because I had to have a brain scan after I suddenly developed epilepsy out of the blue aged 29 – but it isn't related, it's just one of those odd things they find about your body when they look. Like discovering I have a retroverted uterus when I went for my first pregnancy scan.

Hope that is reassuring - I've got a degree and professional qualifications, am married with a ds, so it hasn't held me back as far as I can see!

oops sorry sticky fingers!

Thanks for all the positive replies, I will look for lou33/search as suggested.
Just wondering about the baby being taken away straight after the birth for an operation/invasive tests--anyone got experience of this and how did you cope? Especially if you'd had a C-section. I don't think I could cope with seeing all the other new mums with their babies next to them, whereas I'll be alone.

I had different circumstances to you but the midwifes brought me a polaroid photo of my dd2 an hour after she was born I was unable to see her for 24hrs, and the photo made her real to me. Perhaps you could request this?

Hasbean, thanks for telling me that. I am going to ask the midwife what the procedures are but I would like to know in advance what others found helpful.

Arabica - nowhere near the level of intrusive procedures you are talking about but DS did go to the SCBU for intravenous treatment, and for ultra-sound scans and x-rays, and we had a constant stream of specialists perching on the end of my bed. From this, I would say, firstly do everything you can to get a room on your own. I got moved straight into one after I had a complete screaming wobbly after I could barely hear the consultant telling me DS had no fibula because of the visitors in the next bed. The extra attention and visits, and trips to different depts - scanning etc, also mean you get no rest whatsoever, so a room on your own is good. Can your DH stay overnight with you? that helped me a lot. He was on a mattress on the floor. I was walking, but in Kings all the Mums went everywhere with their babies for tests etc, down the theatre, in wheelchairs if necessary. And Mums were welcome to sit in SCBU. talking to the mw in advance is a good plan.

I also deterred most visitors, because of the level of visits by Paed, consultants, etc etc, and only my parents came.

Actually, a few times, DP took DS down for his iv anti-biotics, because it did make him scream and I was too done in and hormonal to be able to bear it.

A c section may help you, our hospital allocates private rooms after c section &/or if babay is in scbu.
I couldn't see ds for 24 hrs but like the others have said I did have a polaroid. I have found the staff on scbu to be fantastic & care for you almost as much as they care for your baby so I am sure they would welcome a visit from you before the birth. They can talk through what will happen with your baby.
Most scbu's also have parent rooms on the unit so as soon as you are well enough to be discharged from the maternity ward you should be able to move to scbu & be that much nearer.
Hopefully the op won't be needed 7 all will be well. Best wishes

Thank you. Blu, it's really bad that you had to be in such distress before you were allocated your private room. I have managed to speak to a v helpful woman from the hydrocephalus charity, ASBAH, who has reassured me that shunt operations aren't (usually) carried out until 48hrs after the birth, so provided the baby is otherwise OK I will have time with her/him. When I know which hospital I'm delivering at I shall be badgering the midwives for a private room using my new found 3rd trimester assertiveness (demanded, and got, a seat on a busy bus today!)

The 48 hour respite before any potential op sounds relief Arabica.
And i would have thought you would get a room to yourself with a CS, anyway.
Glad you have this fore-knowledge.
My fingers remain very much crossed for you. XXX

Hi Arabica, can't remember if I've told you that my consultant wrote to the ward manager explaining my circumstances and asking if I could have my own room for as long as I was there. It meant I didn't have to use up precious emotional energy asking for one, and didn't need to worry about it.

Also, I had a paed in the delivery room and the community midwife afterwards made the comment that surely the paed could just have easily waited outside the door - the 10 seconds it took her to walk into the room would hardly make any difference. I know you're having a section but it might be worth bearing in mind.

I included in my birth plan a request that the chaplain came to see me as soon as he could. I found that a great comfort, but obviously it's not everyone's thing.

Finally, DD was left in the delivery room with me for an hour or so, then taken off to SCBU for tests. I was allowed to see her in SCBU whenever I wanted (and they phoned the post-natal ward when she needed feeding, as I was bfeeding) but I guess you would need a wheelchair at first to be able to get there. Would it be an idea to discuss the logistics of this with someone? Are there volunteer hospital visitors who could help with trundling you over to SCBU? At one point, when I was confined to bed after some bleeding/fainting, SCBU sent a message asking if they could give DD some formula as they couldn't spare anyone to bring her to me. I refused but did feel under some pressure.

Sorry for rambling. It's a really good idea to start this thread as I'm sure you'll be able to benefit from others' experience.

When I had DS by c/s, hospital policy was to keep you on the ward for the first night so they could keep a close eye on you. I don't think anyone got a private room just for having a c/s--I only ended up with one because they thought DS needed the sun-bed for his jaundice (he didn't, but I kept the room!)
I'm definitely going to get my consultant to write that letter as soon as I know which hospital I will be delivering in, Homerton or King's College. I will also be arranging to visit the ward and the SCBU, and if it's King's will be posting on here to find out what having a baby by C/S there is like.
Such a joy not to have any scans this week, feels like am on holiday. Have routine antenatal check with the consultant on Fri to chat about C/S.

Well, I've got my scan tomorrow, to assess the fluid levels, and discuss whether they think a shunt is needed immediately after I give birth. Depending on what's said I should know by Friday which hospital I'm to deliver in and when the operation is to be. At the moment I'm booked into my local hosp on 27 July when I am 39+1 but that could change depending what they find tomorrow. I feel really scared. I can't help but think they are going to tell me something else is wrong, something even more devastating. I know it's paranoid but am just so frightenedof having the baby and it having big problems, of losing the baby, of having a stillbirth, of finding out what is wrong, and of not knowing. Just wishat times like this--that I wasn't pregnant. It's been the worst 8 months of my life. I dread the scan room, that horrible moment when they turn the lights down and flick the switches on. I always expect them to say they can't find a heartbeat.

Oh Arabica - what can I say - apart from: I know exactly, EXACTLY how you feel.

I don't know how you feel about cyberhugs, but if you like them, I'm sending you lots and lots of them. Good luck for tomorrow. XXX

Oh Arabica, have been thinking of you so much after Sebastian's birth.
Wishing you the best of luck tomorrow.
I found scans horrifying with dd too, for different reasons of course.
I so hope you get the best news there can be for you all. XXX

Thanks for replying emkana. Yes, I do think you know how I feel (you're about the only person I know of who's been in an even remotely comparable situation) How are you doing? I saw your post the other day that you'd had good news but needed to know exactly what had been ruled out.

Thanks Marina. I think I just need a good cry. But we have the carpet fitters in and the roofers so it'll have to wait.

I am sitting here teary for you too Arabica. We have all come a long way in different ways from Ilana's Christmas party at Coram's Fields. I remember your lovely storytelling session. XXX

I remember that and I remember you reassuring me that DS' music class wouldn't be pushy and he would have a fab time (you were right, he loves it). It would be good to meet up when I am not so massively pg/paranoid!

We will do that

I've been in contact with the paed to get her to check with the radiologist whether Jeune's syndrome can definitely be ruled out or not. Haven't heard back yet.
One minute I'm convinced he has Jeune's, the next I'm sure it's fine.
It's just horrible, horrible, all this uncertainty - but you know that. In a way it's easier when they are born because at least you can have a cuddle, but on the other hand it's worse because I obsess even more about him now. When I was pregnant I sometimes "forgot" he was there - can't do that now, just watching him all the time. Good thing I have the girls to distract me a bit.

All the best for you again, I will be thinking of you tomorrow.