Hydrocephalus? New mommy scared.

katelynnmason27 · May 2016

I went in for my first ultrasound sound at my obgyn and the Dr found an abnormal spot in my babies head. She is sending me to a radiologist for further testing. She is also sending me in early to do down syndrome testing as well. I'm scared. This is my first child. Has anyone else had anything like this comes up? Has anyone heard of hydrocephalus? I need advice.

lrg14 · May 2016

I am sorry your going through this scary time. I don't have much experience except my friend's sister was born with hydrocephalus and was/is just fine. I hope you get some reassuring news.

GreenEyedUnicorn · May 2016

It's essentially fluid on the brain. It could clear up fine on its own. Fingers crossed everything is ultimately fine.

FiancB · May 2016

Hydrocepahlus is something to watch, but it's not the end of the world. Might need a shunt to drain the fluid for a while. Fortunately, it doesn't affect babies as much as older people since their fontanels aren't closed and they have a little bit of give before there's a dangerous amount of pressure in the skull.

I'm sorry you're going through this. I hope your doctor offers a really clear explanation of what's going on and that it's nothing serious.

Katemr1146 · May 2016

Hi @katelynnmason27 we went through something similar with my son. They saw too much fluid in his left brain ventricle at an ultrasound. We ended up doing the panorama testing to rule out some of the scarier causes. Then we were put into the high risk cycle of ultrasounds every few weeks to monitor it with an MFM. The fluid never increased or decreased so we were given a diagnosis of Ventriculomegaly. Which was basically a fancy word for more fluid than normal, but less than hydrocephalus, no shunt required. They did a few more ultrasounds after he was born through his soft spot to continue monitoring it.

I remember them telling us that if the fluid increased they would categorize it as hydrocephalus and he would need a shunt. My cousins two sons both have this, and havent experienced much trouble with their shunts (little adjustments had to be made here and there). But overall she says it is no big deal. They are more closely monitored for developmental delays, but otherwise are happy healthy boys.

Honestly the whole thing was terrifying because worrying there is something wrong with your child is the worst feeling in the world. I would find doctors you like and trust. Big hugs mama. FX for great test results.
PM me if you ever want to chat privately.

katelynnmason27 · May 2016

Thank you so much. Honestly my doctor was not very compassionate when she told me about her concern. She said "wow I've never seen this before" when looking at the ultrasound. It honestly terrified me. I'm thinking about getting a second opinion depending on my test results. I'm hoping everything is going to be okay and I'm trying to keep positive. I will totally pm you and ask you anymore questions as they come. Thanks again

AColeman82 · May 2016

My husband has hydrocephalus. These days it is very treatable. He has a shunt that runs from his head and drains excess fluid into the abdomen. During younger years the shunts do have to be changed out due to growth and hormone changes. My husband's last revision was at 15. Like was previously said it is not the end of the world. But if you have any doubts about the doctor I would definitely get a second opinion.

XmomX · May 2016

I don't have any advice but I'm sorry your going through this. I hope you get some positive answers soon.

Katemr1146 · May 2016

How are you doing mama? Did you get any test results back yet?
Thinking about you.

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