hydrocephalus

[chloeb2002]

anyone out there offer me any advice etc.. I feel very dumb i am anujrse so should probably know a lot more but yesterday was told that our baby has signs of hydrocephalus. his 20 weeek scan was normal but he has been large for gestational age all along so have had repeated growth scans. at 32 weeks the sonographer found the fluid behind his cerebellum was raised but didnt report how much etc and noted it as benign finding. so it was missed basically by the doctors. following scan done at 34 weeks baby still big 97th centile big... no head internal stuff done as the consultant who did the scan had no idea she should be looking as 20 week scan was normal. 36 week growth scan done on friday baby still in 97th centile for growth but shows enlarged ventricles by 4mm.
Going for an MRI hopefully end of this week or begining of next and then have to make plans for delivery and afterbirth care etc. very worried. have been tested for CMV and lepto but dont seem to fit the risk catagories. no cats no contact with babies... just dont get how at 20 weeks every thing was fine and now it isnt. has any one ever been in any kind of a similar position?

Chloe Can't offer any experience but just wanted to answer. I have just looked this up on the internet on Wikipedia. One helpful statistic was that 'Hydrocephalus affects one in every 500 live births, making it one of the most common birth defects, more common than Down syndrome or deafness' (I think Wikipedia is US based) so you cannot be alone if this is what your baby has. You could also try looking it up on NHS Direct as there is also information on there.

I think you need to go back to your Dr though and ask more questions as you need more support and information than you've been given.

Good luck, I feel for you in this position.

Hi Chloe,

So sorry to hear you are going through such a worrying time at the moment.
I found out my baby had hydrocephalus at the 20 week scan but she also had spina bifida and Hydrocephalus is very common with this. I am assumuming that they have checked the spine on the scans and everything is ok there. I know that babies with H/lus usually have a shunt inserted as soon as they are born to drain of the fluid and release the pressure.
Have you not spoke to your midwife about this? Surely she can give you the answers you need.
I know when I was in same situation I was desperate for answers and got very little but because it was Spina bifida too I think they were limited as to what they could tell me before I had detailed scan.

I really feel for you right now, I know exactly how worrying it is but you really need proper answers and like petitfilou says you should talk to your doctor if you get no joy from midwife. If you know what you are dealing with then at least it will stop all the whirling thoughts going round your head when you dont have the answers.

I really, really hope that it is all ok for you, please let us know how you get on.

Thanks for the info. 20 week scan was normal and the hydrocephalus seems to have been picked up incidentaly. no sign of spina bifida at 20 weeks and no mention of anything since. i guess the mri will give us a better idea. The consultant just seems to be at a loss as to why it has happened or when other than it has occurred almost certainly after 20 week scan and something was happening by 30 weeks. Dh was adopted and so we have no info about his family bhistory and his adopted mother is the sort who likes to believe she knows more than she does which again isnt helpful. she tells us he was a very large baby and had a large head.. not rocket science he still has a large head! but we a vaginal delivery so cant ahve been that large! cantseemyfeet.. did you continue with your pregnanvy after 20 weeks ? and if so did you have a c section or normal delievery? this seems to be a big issue with the consultant atm as she isnt sure which way to go. I am asuming considering the overall size of the baby and the concerns about putting too much pressure on his head that a c section will be safer.

Chloe,

No I didnt continue pregnancy, the detailed scan I had a week later showed that she had very serious disabilities and was advised that even if she survived the birth then she would have very little quality of life which didnt seem fair on her or the rest of the family as I had a little boy to think of too. Very hard decision to make but still believe it was the right one.

I would personally go for a c section if I was in your shoes, but consultant will no doubt give you best options when you speak to them. They will have dealt with this before and know best way to deal with it. I really hope that your MRI gives you better news and you can look forward tohaving little one. Keep us posted

have an mri date for tuedsay so wil just have to hold my breath. i guess none of it is sitting well in my head? I am trying not to look up any more stuff about it because everything i read seems to contradict my position? eg babies with hydro are smaller that gestational age, when ours is large? I just dont get it. it doesnt help that dd is a very prefect child, high iq of 120, very attractive and good at sports the whole package. i guess that makes me feel even more concerned in a selfish sense about DS now. I alaways knew they would be dfferent as they have different fathers but i just didnt expect to get this far and have a major problem. will hopefully get blood tests results this afternoon and that will tell us if the hydro is caused by an infection.
thanks for the support!

Good Luck Chloe,

Ill keep fingers crossed for you. Let us know how it goes

well one i think good bit of news is that i dont have any nasty infection, had just about talked myself into having had toxoplasmosis after reading the list of thing and ways you can catch it i am amazed now i dont. I am trying to look on the positive side and get some rest time in as well as repeating the please dont decide to come out until after the MRI and appointment with the consultant mantra! quiet weekend ahead with not alot planned maybe some sleep as the school holidays are upon us next week for a weeka nd a day. planned friends over here and a return play day back so DD has some kind of life!

im sorry you are having such a worrying time right now
my husband and i carry a genetic gene which we didnt know and put together can be terrible for our babies
at my 20 wks can with the last 3 babies all was fine problems with the head began to appear from the 27 th weeks or other son was 31 weeks
our problem is just to explain they have the risk of developing craniosynostosis,prem fusing othe skull bones deforming the face causing pressure and one of them had hydro to
this was sorted out at birth the hydro
and the rest of ops at 15mths old,im not going not going into detail here about hydro as your main priority i think is relaxing (very important)and you only have signs of hydro, right now
assuming and thinking the worst and looking online all the time can make us a nervous wreck
wait till the mri,i know how you feel
im 24 wks and i had signs at my 20 wks scan which is unusual for it to show in my case so early
im so hoping predictions are wrong right now
good luck
keep us posted il be thinking of you

Thanks disneystar, the more i speak to people the more they say that severe problems from hydro will show at 20 weeks but it is virtually common place for them not to be discovered with hydro till 30 weeks plus and only then if there is a scan done for another reason. Otherwise hydro will be found out once it causes a problem in babies at about 2/3 months by what time it is a problem. So i am hoping that as we have found it early the odds are good. The ultrasund showed a 4mm increase in his ventricle and this sits in the mild section but like ever i can talk myself into the fact that this may be wrong and under estimated etc. will wait for MRI on tuesday although we wont get the results till friday which is annoying again. By then i will have convinced myself of all sorts im sure!
thanks

chloe keep positive and calm
keep us posted how you get on,

Hi Chloeb2002.
I hope the scan went well. I hope you are not too nervous waiting for results. I am in a similar position to you as I had my anolmaly scan and it showed that the baby ventricles were enlarged - one was 11mm the other 13mm. I also tested positive for CMV in the first trimester. I'm currently in Greece - been here only since last oct - but am going back to UK on Friday for antenatal care. Hopefully I will get an MRI scan as I want to know what is going on with the baby. So thinking of you

My DD had ventriculomegaly and a foetal MRI showed that she had agenesis of the corpus callosum. There was a possibility that she would have hydrocephalus and we were referred to a neurosurgeon to discuss shunt surgery. I was induced at 38 weeks and they did regular scans to make sure her head wasn't too big for a safe vaginal delivery.

We were told that shunt operations are usually successful. The way the surgeon described it was that the baby could be a genius with a shunt if that was her potential.

We didn't want any invasive testing and we were warned of the possiblity that she had Edward's Syndrome.

There are LOADS of babies who have enlarged ventricles in utero, and mothers whose pregnancies are blighted by worrying about their baby. Most of the babies are absolutely fine. In our case, there was a structural reason for it and she does have a definite brain abnormality. BUT she is developmentally completely normal with every prospect of continuing to develop normally. She's now 2.5 years olf.

I know it's impossible not to worry so I won't tell you not to. But there's a good chance everything will be just fine.

Do CAT me if you want any more info.

Thanks for that rolf.. had MRI on tuesday waiting to be contacted with results which i knew would be a drama as the consultant who i manageing my care is away this week and the doctor she reffered me onto is based at the major hospital... where MRI was done but i have no contact for. They are meant to ring yesterday or today with results. I go to my normal hospital appointment tommorow but am under no illusion that they will know any more info as the people i need to speak to wont be there.
The radiologist said not to panic so i hope from that there isnt anything too major going on. Its very easy to create lots of awfull outcomes in my head!
will maybe have to keep breathing deeply till monday when consultant will be back, unless i get a call today! consultant will be livid if no one has spoken to us by monday as she feels very bad about not looking for stuff at 33 weeks when she did a scan, but in fairness she had no idea what was going on, was just looking for fetal growth.

have you heard anything yet Chloe??

off to hospital today.. but not holding my breath to find anything out. Hav etold DH to go to work and not bother coming. Mostly beacsue i dont want him hitting the roof if they dont have any news. He can be kind of irrational at times and i guess because we see this from different angles the be all and end all for him is what is wronga nd why and for me it is how and when will DS we delivered. Id like to get some progress on that today, or amke an appointment to go in on monday and see the boss consultant. either way just thinking calm thoughts!

still waiting for fetal med opinion as she has been off sick all week. just my luck. did cast my eye over teh MRI report yesterday. Reprted mild ventricular hypertrophy, so echoed the ultra sound and enlarged cisterna magna, but no deveiation to the cerebellum, so i think mostly good news. No other anomolies were found so no signs of spina bifida or other obvious problems with his brain function. will wait with baited breath for review on monday!

Let us know how it goes chloe. Good luck

we have appointment with consultant fetal med bloke on monday...(next monday 21st!) another week of convincing baby to stay put! very boring... made me laugh that the consultant if flying in from the uk on Wednesday to start work on monday so we will be his first batch of patients... home from home. move to aus to escape the NHS and they follow... just typical eh! still hope he will have some news. thsi the baby is now officially far too large as the mri measured him as 41 weeks big.. ooppss. so will be a bruiser. i am ow praying they get him out safely at some point!
adammsfamily hope all goes well for you. i had the cmv test and lepto, bothe neg, but i think cmv would have been the lesser evil of teh two. have they treated you? my consultant mentioned gives antibiotics if it was CMV. to reduce any fetal infection and clear the flow of CSF.

Hope its not too frustrating you have had to wait so long to hear the results from the consultant. When is your due date?

I have returned now to the NHS! Saw GP yesterday and he has referred me to the hospital so I am wating now to hear from them. Not had any treatment for the CMV - was told in Greece that there wasnt any. But will ask once get hospital appt.

Take care

i may be wrong but kind of got the impression that they could teat cmv.. maybe it is that they treat the baby when it arrives?
Will be 39 weeks on friday! pushing it close but the line seeems to be the longer he stays put the better informed decsions will be. I guess in alot of ways i am more relaxed about it now i have had the mri, the venricle size has not got any worse worse so hopefully thats a plus. still reprted as mild which is promising my big worry is if he arrives early the panic about how to deliver, i just hope someone has done their homework and will make a quick decsion. baby is also very big so taht adds to the complications his body was in teh 97th centile and his head at 105 ish.. at last ultrasound and weighed about 8lbs then (36 weeks). generally they seem pretty good here so cant complain, had mri appointmane within 7 days and consultant review 7 days from them realising that the consultant had gone awol. just all last minute as the radiographers hadnt reported the 30 wek scan correctly and it all snow balled.

Hi there
Happy 39 weeks - almost there. How are you feeling?

just waiting to see the boss consultant today. am definately over being pregnant now!! hopeing they will ok a c section and get on with it! or induction dont mind which just had enough now. DD didnt come along of her own accord and i dont see this one playing either. veryt very bored and sick of worrying about all the ifs buts and maybes!
still mustnt grumble eh!!!
hows the uk?

yet another non productive meeting with the drs. seesm that is the way it will be. hope to make headway today with my normal conslutant! seems that as no cause is evident that the best approach is to suck it and see when the baby is born. at that point any congenital issues may be more apparent. The radiographers want to do another MRI once the baby is here to check findings again. and depending what does or doesnt appear once he is born there may be some chromosme testing. The odds are currently 20% that he will be born with some kind of deficet which it seems could be anything but most likely it is hearing loss or speech impairment. but again depends on the cause of the ventricular megaly.
so not alot further forward. next drama is still how safest to deliver......

Sorry to hear info not productive nor conclusive. I think the uncertainty of the information is hardest. Doctors in Greece were saying that "it could be this or could be that, but we cant say for sure". I know what you mean about the if, buts and maybes.

How big are your babys ventricles? Are they both enlarged by 4mm? How are you feeling about delivery and the planned testing after? Thats good that another MRI will be done once hes born.

I have initial midwife appt on Thurs. Have been referred to hospital. Waiting for appt there now. Nothing is moving very fast at the moment but I have 9 weeks to go....

Let us know how it all goes...