hydrocephalus in babies,does anyone have any experience?

[whymummy]

hi
my 9 month old niece has been diagnosed with hydrocephalus after her new paediatrician noticed that her head was too big,my sister is really worried and although we have read about it on the internet it all sounds too technical and scary,so whysister has asked me to ask on mumsnet to see if any of you has had any experience,will the fluid go on it's own or will she need an operation?
thanks in advance

[lou33]

DD1 was born with this. Am happy to talk about it if you have any queations.

[whymummy]

oh yes please lou,thank you so much
how's your dd?did she need an operation?when was she diagnosed,was it before or after being born?
thanks again

[lou33]

She's 12 1/2 now. She was diagnosed at about 9 weeks old, after I had been expressing concerns about her (she also had 2 heart defects), and they gave her an mri scan. Her head grew alarmingly for the first couple of years, 4cm in one month, which really panicked me. Her head circ was off the scale, and her developmental milestones were delayed. She didn't sit until she was nine months, didn't crawl until she was 15 m, and didn't walk until she was 2.

Dd was monitored regularly by our fantastic paed neurologist in case she needed a shunt, but it never actually got to that stage. The hydrocephalus arrested naturally, which we were v relieved about of course. From then she was just checked up on every few months, until the age of 8, and she was discharged. She is above average intelligence now, and won a scholarship to a private school at the age of 7/8, so it is not all doom and gloom.

Having a shunt can be a mixed blessing. Of course if the amount of fluid is increasing faster than the ventricles can drain it away, then it causes pressure on the brain, as the skull cannot grow fast enough to compensate . In this case a shunt is introduced, which drains the fluid away from the ventricles, usually into the stomach. These are obviously necessary to preform or else the rapid and persistent fluid build up would ultimately be fatal. The problems of having a shunt , is that they can get infected , causing high temps, poor drainage etc, and then your niece would have to be operated on again to clear any blockages (iirc). However, I have to say that had we been faced with the possibility of having a shunt, we would have let her have it without a second thought, as the alternative would have been too dangerous imo.

These people would be good to talk to I think. We had a visitor round when dd1 was small, and they were v nice.

Let me know if there is anything else I can answer.

[lou33]

Also if your niece is in London I can recommend a fantastic neuro paed.

[whymummy]

thank you so much lou and i'm so glad your dd is doing fine,my niece lives in barcelona and her new paed. is also a neurologist wich is great,she's the one that realised there was a problem,the other pead.retired so it was a blessing as the new one realised straight away.my sister was too upset to ask her any more questions and is a few weeks before she takes the baby for her next appointment,i will email her this and she'll be so grateful thanks for your help and if she has more questions i will let you know
lol xx

[lou33]

Glad I could help. You can contact me privately if you would prefer

[edam]

Whymummy, apparently I had this as a baby but no-one knew at the time; was only discovered years later when having a scan for a completely different reason.

I was told that hydrocephalus is a lot more common than you'd think but often resolves itself, as Lou says ? so many people don't realise they ever had it unless they eventually have a scan for some reason. My head is a bit on the big side (our family GP used to sympathise with my mother over this) but not to the point where people comment or anything; on the big side of the normal range, I guess.

Hydrocephalus doesn't have to be the classic, terrifying scare story. Just to use me as an example, I have qualifications (degree, post-grad professional), I hold down a very demanding job at a senior level and I have a very healthy and lovely ds. I'm not boasting (blimey, I screw up just as much if not more than anyone else) but trying to contrast the depressing picture you might get from the stereotype.
HTH

[lou33]

Dh is off to Barcelona on the 16th WM, as his solo birthday treat!

[lou33]

That's good to hear edam. Dd is like any other pre teen now. She will go on to college etc if I have any say in it. I don't treat her any differently as a result of her hydrocephalus, there is no need.

[whymummy]

thank you edam,that is so reasuring,i'm sure my sister will feel a lot better when she sees both your positive experiences
thanks for the offer lou
hope your dh has a great time in barcelona

[whymummy]

lou and edam just to let you know that my sister hasn't got the email yet as she's been away but i've told her what you said and she's really grateful,her next appointment with the paed.is thursday afternoon so i will let you know how it goes
thanks again xx

[Fio2]

whymummy so sorry to here about your neice, it must be worrying for your family and you xxxxxx Hope all goes well and you are all ok xx

[lou33]

I would like that Whymummy, be interesting to hear how she gets on. Fingers crossed.

[lou33]

Just remembered, I have a link to ds2's website, and you can see dd1 on there, it might encourage your sister a bit. Did you see it the other day on the Boden sn thread?

[whymummy]

thanks fio,hope you're all well too
lou i missed it,i would love to have it and show my sister,i've been trying for ages to get her on mumsnet but her dh works from home and she's too scared to do something wrong with the computer and he won't be able to meet his "dead lines"
i will look for the thread,thank you!

[sunchowder]

Thinking of you and whysister...hope the appointment goes well.

[fabarooney]

There is apparently a new procedure which is an alternative to the shunt. It involves cauterising (I think) a ventricle and has the benefit of being far less invasive and a one-off procedure. Apparently shunts often need to be replaced as the brain grows larger. Not all patients can be candidates for this procedure, not sure why. An MRI scan confirms whether or not a patient is suitable.

I got this info from a friend in the Netherlands who has a little boy with mild hydrocephalus. He does not need the surgery now but is being monitored closely. Let me know if you want any more info and I will ask her. Fingers crossed that it will all sort itself out on its own.

[edam]

HI Whymummy, hope all is well with your niece and glad you found my post reassuring. And Lou, great to hear your dd is doing so well. Have to admit when doc mentioned hydrocephalus I completely panicked (all I'd ever heard about hydrocephalus was dreadful scary stuff) but when I saw the surgeon and he talked me through the scan and implications it was sooooooo reassuring. It can be and often is much less extreme than you'd imagine.

[whymummy]

thank you so much sunchowder!!
how's life in sunny florida?are you all well?

[whymummy]

thank you fabrooney i will let you know,i'm sure my sister has a million questions to ask.
thanks edam,she really did find your messages reassuring xx

[sunchowder]

All is well here Whymummy!

[whymummy]

great to hear sunchowder

[whymummy]

fabarooney how old is your friend's little boy and how long have they known?
there's one mum from dd's nursery (she was in a bbc program called "life before birth"she lost 3 babies and the 4th one was saved by having transfussions(i think) before he was born,there's a follow up program on bbc4 tomorrow at 9 pm.)she said she knows qite a bit about hydrocephalus but we haven't been able to talk properly yet

[fabarooney]

whymummy, he is nearly 1 year old and it was picked up about 4 months ago. He was being very closely monitored for signs of this as he has spina bifida.

[whymummy]

thanks fabarooney,hope everything is well with your friend's boy too