Hydrocephalus

15 Replies
kaz - April 19

On my 20 wk ultrasound my baby was diagnosed with hydrocephalus.I have looked up what it is , but have not found any cold hard fact to explain what will happen to my child,i.e. the affects, will it servive to term, will it have brain damage, or any other type of dammage. Has any one else gone through a similar experience? Did you continue with the pregnancy?

 

try this - April 20

http://www.hydrocephalus.org/facts/ http://my.webmd.com/hw/raising_a_family/hw198129.asp

 

MICHELLE - April 20

I WENT THROUGH THE SAME THING WITH MY DAUGHTER AND SHE IS NOW 9YRS OLD. THE GOOD THING IS THAT THEY CAUGHT IT EARLY, I'M NOT SURE WHAT TYPE OF TREATMENT YOUR CHILD WILL RECIEVE, BUT MINE HAD 3 SURGERIES BEFORE SHE WAS 15 MTHS TO REMOVE FLUID FROM HER BRAIN, FINALLY THEY DECIDED TO PLACE A SHUNT INSIDE HER BRAIN TO DRAIN THE FLUID. IT WAS ALL TRYING TIMES,UPSETTING AND LIFE CHANGING SITUATION. BUT WITH PRAYER AND A GOOD NEUROSURGEON EVERYTHING WILL BE OK. MY DAUGHTER IS NOT DISABLED.SHE'S GETTING STRAIGHT A'S IN SCHOOL,PLAY BASEBALL,BASKETBALL AND OVERALL A VERY BEAUTIFUL AND INTELLIGENT YOUNG GIRL. YOU SHOULD ALSO ASK YOUR DOCTOR WHAT TYPE OF HYDROCEPHALUS IT IS, BECAUSE THERE ARE DIFFERENT TYPES. I HOPE I HAVE BEEN SOME KIND OF HELP TO YOU. I'VE BEEN THERE SO I KNOW WHAT YOU ARE GOING THROUGH, YOU WILL BE IN MY PRAYERS.

 

Audrea - April 20

I am a neonatal ICU RN and have taken care of many newborns with this condition. It means the spinal fluid in baby's head does not drain properly and backs up into the brain. Many times a shunt is put in from the brain to empty into the abdomen. Many children live on to have happy normal lives with this condition as long as it is taken care of early on. It certainly will be trying for you though to go through that with your child.

 

cynthia - April 23

my uncle's neice had this, plus an extra finger. she received good medical care and is now such an outgoing delightful 10-year old, an amazing little person who lights up the room.

 

cynthia - April 23

i meant my uncle's daughter

 

dymond - April 27

my daughter has this-she is now 9 months-shes also got hydranencephaly- i was told she wouldnt make it through the preg but she sure did and is beautiful. i was told to abort but i said no-god sens them to us how they come for a reason. good luck and if u need to talk just write [email protected] the way im 18 and delt with this on my own-u will be fine

 

kristina - April 28

I am 21 years old and have had hydrocephalus since birth. I had five surgeries before I was a year old. I also had many other medical conditions and I was 3 months early but am doing fine to this day except for an occasional revision from time to time

 

KEEKEE - April 28

Hi Michelle or anyone else!!! There is a young lady that can use some support and info about Hydrocephalus. She is under Infants-----18 W/terminally ill daughter. If you could give her some advice would be so helpful and nice. Thanks for reading!!!!!! Baby Dust!!!

 

dymond - May 25

just wondering how things are going.....

 

Steve - June 15

I currently live in Japan with my Japanese wife, we have lost 2 babies due to Hydrocephalus. We are devestated. Both times was advised by our doctor. Soon we will go to a genetic councillor for tests, possibly DNA. In Japan we get no support other than family. No insurance covers us.

 

jake - June 16

Our daughter had an enlarged measurement in the fluid cavity on the ultrasound, but it resolved as she grew. Depends on how many millimeters it is now on whether it is "marginal" or truly hydrocephalus (>3mm?).

 

B - July 6

I am a 26 year old woman who was born with aqueductal stenosis. That means the drainage of CSF was blocked. I have a VP shunt and had multiple surgeries before I was 2 months old due to malfunction and infection. Since then I have only had two revisions, one because I grew, and the second because the shunt untied at the connection point when I was hit in the head with a basketball at school. I am getting married in August and we are planning to have children. In my research on maternal hydrocephalus I have recently come across many helpful sites on the web. One in particular was a Medical Center in Australia www.health.adelaide.edu.au/paed-neuro/hydro.html found in yahoo search, hydrocephalus. It has pictures, CT scans, MRI pictures, and a full and detailed explaination of what causes the different types of hydrocephalus, rates of infection and malfunction, what kinds of shunts there are, etc. Other avenues you can look up are neurological disorders, water on the brain, aqueduct stenosis. I will say this, every person is different and the results are never the same. What works for some may not work for others. Find yourself a very good neurologist, that is key. He/She must be very familiar with hydrocephalus and proper treatments. Good Luck with your journey. Your child will bring you the strength you need to get through this.

 

Jodie - July 14

Kaz or anyone else is there some site we can get more info on please email me at [email protected] I am in this same place and am worried for our baby,

 

lullabelle - February 2

my friend has just had her 5 month scan and has been informed that the baby has fluid on the brain, as you can imagine this completely threw her and she was unable to ask more about what this means for her unborn child. she has to return to the hospital next week to see a consultant. could anyone offer any advice on this.

 

sanjavi77 - February 3

Hi Kax, go to Medtronic website. There will be some info and I have seen many kids with hydrocephalus and most of them have shunts placed in the brain to drain the extra fluid out. Just sometimes, once in a while they can give minor problems and infection. All the best and prayers for you.

 

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