Tell Your Story

If you have a Hydrocephalus story, we invite you to share it below:

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Stories We’ve Received:

(1) Jennifer

Fri, 30 July 2010 18:52:01 +0000

My name is Jennifer. I am 26. I was born January 31st 1984. I weighed 2lbs 2ozs. My biological mother didn’t want me so she gave me up to her sister. When my adopted mom got to the hospital she didn’t even ask about me, she was for sure I was dead. She had never heard of hydrocephalus, but knew it couldn’t be good. My adopted mom told me that they just kept measuring my head and it just kept getting bigger so I went in for brain surgery the day I was born. I stayed in the hospital for a while, came home after 3 months. My adopted mom who I will call mom had to end up taking me back to the hospital because I kept being sick. When she took me back to the hospital they found out that I was on the wrong milk. My mom had two kids when she adopted me, they were nine and eleven. I am biracial and they are white, there is no difference in me and them, they will tell you that. I am doing good. I am 26 and I haven’t had a surgery since I was six for hydrocephalus. I am now just trying to get the word out for it and spread awareness. I think it is awesome that you have this website. I have alread joined your fb site. Hope to make new friends. Jennifer PS. I was published in our local newspaper, in the health magazine about hydrocephalus.


(2) K Bates

Tue, 17 May 2011 17:52:58 +0000

Hi my name is Kyle and my story is a little different. I wasn’t born with hydrocephalus but rather came down with it at the age of 12yrs old. The doctors took 2months to diagnose me because they had never seen spontaneous hydrocephalus before without head injury or due to age. I was shunted for the first time and have received 17 revisions since. I am now 38yrs old and have lived a pretty normal life… depending on what you call normal :o). I am married and have 3 beautiful children. I have spent most of my life trying to be as normal as I could, only to recently come to grips of what I have gone through. I am pleased to see you guys getting the word out. The facts show that 1 in 500 children are born with this and that shunts have a high malfunction rate. I would like to see kids in the future have to undergo much less than I did…. keep up the great work on getting the word out.


(3) sydney

Sun, 3 March 2013 14:21:45 +0000

i am twelve years old i’ve had hydrocephalus since birth shunt was placed three days old i’ve had many surgerys since one being 12/1612 i missed the last week ofschool before christmas when iwent back some people asked so i did some research and this is my problem i told people whom arent really friends so if i could tell them why cant i tell my friends ideas?

(4) Christopher Candy

Tue, 29 September 2015 12:26:32 +0000

My Name is Christopher, I was born in 1981. I was 27 weeks Premature. weighing only 2lbs 4 Oz . I Developed Hydrocephalus Due to scaring in the 3rd and 4rth ventricles. I have a cyst in the 4th ventricle that operates independently. also had to be shunted. I acquired hydrocephalus from E. Coli Bacterial meningitis. that was the reason for the scaring. I was put on an experimental drug ( the FDA was trying out ) for this type of meningitis. the only animals nested on this Drug were Rats. ( no Humans) Moxalactam was the drug used. within a week …. the meningitis was gone ! …. but Hydrocephalus Developed at 6 weeks old …. a shunt was placed from brain to stomach at 7 weeks old.


(5) Richard Griffin3rd

Sat, 5 December 2015 1:02:24 +0000

I am a 50yr old man that has had Hydrocephalus for 41yrs.


(6) Sarah

Thur, 18 August 2021 10:47:24 +0000

My name is Sarah. I was born with Hydrocephalus on December 19, 1958. It was determined that a shunt was needed. One was placed when I was 3 months old. When I was age 6, problems occurred with the shunt. Surgery was performed. The shunt was removed. After surgery, I was monitored. The surgeon determined that a replacement shunt was not needed. I lived a normal life until two weeks after my 16th birthday. That morning, I developed a severe headache. That evening, I vomited three times within two hours. I was rushed to the emergency room. It was determined that a shunt was needed. A shunt was placed that day. I lived a normal life until January 3, 2015. I was taken to the emergency room. The non working shunt was removed and a new shunt was placed. I have annual check up,now.