Hydrocephalus

[KeiraYvette]

Just looking for other mothers in Australia that also have children with Hydrocephalus. My daughter was found to have fluid on the brain at 36 weeks gestation and at 7 weeks old had a VP shunt inserted. Am interested in finding other parents to speak with who's children have this condition as it is meant to be a pretty common condition (1 in 4) but its not publicised and common knowledge to most people.

Hi
How are you?
My youngest has hydrocephalus and a few other brain related abnormalities.
We found out when I was 16 weeks pregnant and due to the severity of his condition were advised many times to terminate the pregnancy. Long LONG story but I trusted my instincts and asked for a final scan (after many that showed strokes, tumors etc) and the fluid levels had decreased to slightly above normal size.
Hudson is now a happy adventurous beautiful 2 year old that I am soooo thankful to have.

Hes had to have 1 surgery, a third ventriculostomy (they drilled into his skull to bypass the blockage) at 8 months and so far so good.
He walked late (about 23 mths old) but now at 28 months you would never guess he had any delays at all!

Id love to hear your story and am more than happy to share more of our details if you want to hear them.
I too agree that its a common thing, yet no one ever seems to talk about it!

Anyway drop me a message if you wanted to chat, would love to keep in touch as I dont know any other mums with hydro kids

Take care and hope your little girls doing well!
Crissty

[*charmalea*]

hey , i know hydro is very common , and i know the success rate is good too ... i think you girl looks great and its very cute ....

you are lucky to have her , a close friend of mine lost her boy to hydro and many other forms of "chephaly" meaning his head had water in it but no brain ... poor lil liam couldnt survive ...

hugs to you and crissty for being so srtong xx

[~Kim~]

Hey Chickie, nice to see you around here!!!

Hope she's recovering really well from all her dramas.

[KeiraYvette]

Hi Crissty thanks for telling me your story.. yeah going alright.. took Imogen in for her post op checkup yesterday and ther eis a problem with the shunt.. minute neuro surgeon saw it he said there is fluid building up around the shunt and valve.. she had some tests done and it appears blocked.. so back into hospital tomorrow to have it taken out, fixed and put back in... so hope it works this time.. was praying that it would be a while before she had a blockage... feels so sorry for the poor thing, only 12 weeks old tomorrow and already having her second operation..
Chrissy how do u know why they decided to do a third ventriculostomy & not put a shunt in? glad to hear that his doing so well.. With Imogen they didnt think it was hydrocep at first, were just monitoring her after birth but once the neuro saw her he confirmed it was and wanted to vp shunt inserted asap.. i found an american website thats a support service for families with hydrocep.. ill have a look for it and let you know.. i put on posting on that and have been in email contact with quite a few mothers in america who's children have hydrocep... its really good being able to talk to them and share experiences...
take care..

[Renee Hicks]

My baby girl was born 6 weeks early and about two weeks after birth she was diagnosed with hydrocephilus. She is now 3.5 months old and is heading in today for her 6th VP shunt. She has had troubles with them blocking and infections. Has been a rough ride for her so far but hoping this is the last one for a while. She is one tough cookie!! Will be nice to get her home all up i have only had her home for about 3 weeks. So as you can imagine we are quite tied of hospitals....

Chloe ended up getting her vp shunt removed and a EVD put in whilst she was filled up on antibiotics to fight an infection, i was told that the infection wouldnt go away while there was a foreign body inside, so shunt came out and a external drain was put in, w as not nice as it works by gravity, i couldnt pick her up unles the nurses clamped the drain and i was only ever allow to hold her at feed times. After 14 days on the antibiotics she was back in theatre to get external drain removed and yet another vp shunt. This time a different shunt was used with built in antibiotics which we are hoping will do the trick as once you have an infection it is more likely for it to return especially if you use the existing hole wher the infection was. They were goin to go through the other side in a fresh site but she had a central line drip on that side which was going to interfere with the path of the tubing.

She is home once again, and so far so good, the sunt does look slighty swollen, like there is fluid leaking at the conection but surgeon said not to worry as its doing the job for now, so i am guessing at some stage we will have to return for yet another revision.

We are told that it is extremely difficult to et a shunt working for long periods of time on a baby until it reaches 6 or 8 months old as their heads are always changing. JUst hope we get longer out of this one.

It has been very hard on me and my husband, but Chloe always come out of it smiling!!!!

[KeiraYvette]

Hi girls thought i'd write an update.. Imogen has been ok since the shunt revision, turns out the valve disconnected from the tubing and has been fine since. They have been testing many different things just to make sure there is nothing else wrong. THey know she has a brain abnormality, thining of the corpus collsum and a genetic problem 6q deletion. She has regular physio as she is a bit behind and is a bit weaker than she should be but is progressing pretty well considering. She rolls around ont he floor, is constantly blabbering and looks like she is close to sitting up on her own so pretty close for the milestones for her age
A few days ago she had a seizure and stopped breathing, the episode only last about a minute and she came to by herself afterwards which was a relief,.. so another night in hospital, more tests done to figure out what happened but they couldnt find out the cause and she was discharged yesterday.. she has been in good spirits ever since.

[Tiger]

Hi,

I have a 15 month old son with complicated Hydrocephalus. It was caused by bacterial meningitis at 3 weeks of age (he was 8 weeks prem). He had his first VP shunt placed when he was only 9 weeks old, he wasn't even the size of a newborn yet. He began having seizures a month or so after the first shunt was placed, we assumed it was due to him outgrowing existing seizure meds and damage caused by the meningitis. An MRI revealed that the Hydrocephalus extended beyond the area the shunt was in and that he would possibly need drainage to 5-6 areas. With surgery they were able to bring this down to 4, and he now has 2 VP shunts each draining 2 areas if that makes sense! He has had 17 shunt related surgeries, 2 infections and we have spent a lot of time in hospital. The longest we have been home is 10 weeks (yesterday, and it is wonderful!). It has been a long difficult road, but DS is an amazing little boy who is always happy and smiling so he keeps us going when times are tough! If you would like to chat more feel free to PM me.

Take care

[Renee Hicks]

Wow u guys have had a tough time buy the sounds of things and i thought we had it bad. Hope things are on the right path for u all now and it remains that way. All the best.

[rachel6188]

i had hydro as a baby (24 weeks i was born) and i had a shunt fitted. i spent a year in nicu as a baby.
i am perfectly healthy (apart from probs with adhesions on bowel and abdo)
so hydro is scary but you babies hopefully will be ok.
it must be so scary for the babies who are having seizures and stopping breathing...by the age of 1 i had stopped breathing 8 times and sometimes for more than a few minutes.
as i say iam ok now,no lasting effects.
sorry to babble on hth xxxxx

[Tanya]

My brother had Hydrocephalus caused by meningitis, not sure how old he was.

He started getting head aches when he was about 19 and he had to go and get it replaced.... it was a nightmare!! The replacements kept failing and he ended up with some brain damage. Don't know how many times they tinkered with his head, but it was a lot.

I hope that my contribution isn't too scary, I just wanted to make you aware of what to look out for in in case something goes wrong

Tanya

hi, my boy had secondary hydro due to a large cyst growing inhis brain. he also has a thin front CC and missing rear CC. i would love to chat to you more and i have more stuff i woudl love to talk to you about.

alos i am in campbelltown! it is great that we not too far away!

My boy is 17 1/2 months old and by the sounds of your little girl they are both doing well!

hope to hear from you soon

[tomella]

My 4 year old son has got hydrocephalus. His is because of Spina Bifida & Arnold Chiari Malformation.
It was picked up on the 19 week scan, his shunt was put in at 5 days old.
He's had 2 blockages, 1 at around 4 months, the other one about 10 months later, so far none for 3 years.

[gabrielslife]

at the first time when the doctor said that my baby have hydrocephalus at my pregnancy he suggested abortion, but we didn't give up on the baby and continue with the labor, right my little angel is living with me, he always brings joy to all of us and brightens up our day.. chances of a baby living with hydrocephalus are higher now because of the recent advancement on therapies.. so don't give up with your baby..