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?

yes bi lateral increase of 4 mm. so is graded as moderate. by all accounts thats not bad. i guess i would feel better if i had had an amino and new taht was clear. still worried about all the congenital nasties. had a long meeting with my consultant and her reg on tuesday and have decided to be induced tomorow for a trial of laobor. the consultant wont use instruments so no forceps or ventouse. no epidural as that increases teh likelehood of the use of instruments in delivery and will be very closely monitored. her theory being that if the baby needs intervention shortly after birth the better shape i am in the easier i will cope. The risk for a normal delivery is minimal and no assurance that delvery of any kind will prevent further damage so will go with the flow and see what happens. She has said she will go to c section much quicker than normal because of the circumstances but fingers crossed it doesnt coem to that. The other annoying thing was the calculation of a 20% cahnce, by alla ccounts this is also based on the fact that i have a dd who has no problems, yet she is not my husbands biological child so that enters the whole odds thing again, have decided not to go down that line as it is too stressfull. pizza for dinner. an early night and up early for the hospital.

Good luck for tomorrow, chloe.
I hope everything goes well.

Hope it all goes well. Will be thinking of you...

ok so evrything tat could have gone wrong did but we are still all ok and safe to tell the tale!was induced on friday 25th fully dilated after 14 hours of being strapped to a ctg machine! (not fun) then ds who had meconium waters when they broke them decided to was not going to come out for anyone at 11pm. his heart rate dropped to 40 everytime i pushed but was very lucky as i had said twenty mins before i felt unhappy proceeding and theatres were sat by in case! ended up with an emergency section with what can only be described as the best possible car availiable! my consultant drove in, two registras, two anaesthtists (shift change time!) and ds was out within fifteen mins of the emeregncy buzzer goiing off.
he is fine for now. have a big ceaser scar because he wouldnt come out! so a grin instead of a smile, hip to hip! had to have a drain in and lots of anti biotics because of the meconium and i tore as the hauled him out. His head it appears wouldnt mould? when he first came out he had no fontanelles and only very small sutures in his skull. these have increased now, although slighly worryingly so has one side of his head yeaterday, two of the plates on the same side of his skull are raised, the paeds on the phone said not to panic unless his fontanelles bulge. it is very very slight so i am yet to race him to the paeds but i may go next week if nothing changes and will of course go if it gets worse. They did an ultra sound before i was allowed to go home and that showed no change although highly unrealiable at looking at the ocepital horns which is where his enlargement is. still good that it is not blindingly worse!
The good news is that no sign of any congenital promlems so what has caused the venticularmegaly is a mystery.
he sees a pead neaurologist in three months time for a repaet MRI and follow up. this will be moved forward if he becomes sypmtomatic but so far so good!
oh and a very healthy 9 lb 7oz so allowing for the weighthe lost due to drinking lots of mec fluid the growth scans were about right he was 8lb at 36 weeks and should have gained 1/2 a pound a week. we knew he had lost a bit just before they induced.... 9 lb 7 quite big enough...

Many congratulations on the arrival of your son. You had a tough time of it. You must be relieved there are no other problems and all seems well.

Congratulations Chloe, I hope your are enjoying your new arrival, and that he continues to thrive.

Congratulations! Well done!! That is great news. Glad to hear that your little boy is well. Hope your recovery from C Section is quick. Congratulations again!

Congratulations Chloe . So pleased your son is doing well.

Hey Chloe,

well done you!! Many congrats on the birth of your son, what did you call him??
Hope that you are feeling ok and so glad that your little one is doing fine. You must be feeling relieved it is all over.

Sounds like you really went through the mill but I bet he is worth every minute of it.

so far so good. very relieve he has no addditional problems. He is called Torin. off to get the paeds to have a look at him one day this week, mostly because of the bulgy bits he has and because i have no idea what suitable head growth is his head seems to have goten bigger very quickly.. like 2cm in a weeek. so will go and get him prodded.thanks very much for everyones support!

Cloe - what a story.

I hope everything is OK and that you are both doing well

He sounds lovely

adams family any news of your MRI? DS is doing good. still has bumpy head! but is doing all the things you would want him to do. my c section scar has turned nasty so loads of snti bioyics goind down the hatch to try and save it.. along with ds now having a mouth full of thrush to boot! still hope all goes well with your fllow up. thinking of you.. not long now.

Hope the antibiotics are doing their job. You have had a rough time of it. Torin is a cute name - glad he is doing well.

I went for ulrasound scan - baby still has enlarged ventricles and now the scanner saw a hyperechogenic bowel which can either mean nothing or could indicate the baby has the CMV virus. The doc didnt think that an MRI would necessarily show anything different from the scans so we just wait and see what happens when he is born.

The consultant gave us a 50 50 chance of having a healthy baby. Said that if baby has virus badly could die or be v severely disabled or develop deafness (most common outcome) in first two years. Or have virus n not be affected. Or not be affected at all. So we wait n see. Have another scan on Friday.

Take care - are you able to rest up?

not sure if it is any consulation buut i think the docs have to warn of the worst possible outcome, I have also come to the thinking that the more you/ they look for things the more is found.. micro management. we are still avidly head measuring and looking worridly at all lumps and bumps on ds's head.Deafeness is a likely risk we were warned of too. the only thing i find frustrating is being asked is he behaing normally... at three weeks old and having had the issues before he was born how the monkeys do i know what is normal! sure you may find the same thing, a mum at school has a daughetr who had albanism, she reliably informed me that eventually i will be reasured he is a ok or not by his behaviour. my fingers are crossed for you.

Hi Chloe.

Close friends of ours doscovered that their DS had hydrocephalus at aged around 14 weeks old, it was never picked up in any scans and was only noticed by HV at one of his weighing sessions.

Various scans etc confirmed hydrocephalus and he was immediatly taken to hospital to have 'shunt' fitted.
Think he will have to have another op aged around 5 to put in another shunt.

He is now 15 months old, wonderfully active, no other health issues at all, developing at the same rate as any other 15 month old.

I know that the consultants will always give the worse possible outcome, in this instance it appears to be going just great for this family.

Just wanted to give you some positive news about this.

Best wishes to you all, if your consultant etc are as good as our friends, then im certain that you will recieve wonderful care and treatment for your LO.

Hi Cloe

My daughter has hydrocephalus. There was no sign of this at any scan and she was born with a norm head size but it then rapidly increased off the top of the centile chart for her age. She had a VP Shunt fitted at 18 months and is now 5 and about to start school. She also has an 'access device' fitted below the skin towards the front of her head. Ths is basically a small plastic cap which sits just beneath the skin. This allows the docs to insert a needle into the CS Fluid and measure the pressure at any given time. Both scars are totally hidden by her hair and you'd never know she's had neurosurgery.

She has slightly delayed gross motor development so was late walking and is a little behind with things like balance, jumping etc. So, she won't be in any olympic event in the future, but hey, so what. She is lovely, very intelligent, loving child who has developed normally in all other areas.

If your wee one does need a shunt I know this will be a scary time for you but shunts have been in use for decades now and do a great job. You'd get lots of support and, from experience, we couldn't believe how quickly our daughter recovered.

I am keeping my finger's firmly crossed that all is well with your son.

thanks for the positive story! it all helps. Ds's head is still growing too fast so will just have to see what the neurologist says in a few weeks time.
thanks again!