Our Hydrocephalus Stories
Diagnosed In-utero
Cayden
Story Written by Mother
Besides the Chiari 2 malformation, there was no sign of hydrocephalus. At 38 weeks, our beautiful baby boy Cayden was born.
Diagnosed at 59
Deborah
Story Written by Author/Self
Knowledge is power and I believe it’s better to be educated than to go into something blindly. Particularly, brain surgery!
Diagnosed at 23
Gabrielle
Story Written by Author/Self
My hydrocephalus has played a role in shaping me into the person I am today and has changed my outlook on life. “Always play the best game with the cards you’ve been handed.”
Diagnosed at Birth
Alexsis
Story Written by Author/Self
I was born 3 months early at just 28 weeks and I have had more brain surgery’s than birthday’s!
Diagnosed at 7
Vincent
Story Written by Mother
As Vincent recovered we scoured the internet looking for anything on Hydrocephalus. We had no idea so many people of all ages suffered from this condition!
Diagnosed at Birth
Luna
Story Written by Mother
Luna was born 7 weeks early and delivery went pretty well, and after 17 hours our baby girl was finally here!
Diagnosed In-utero
Hiro
Story Written by Mother
Hydrocephalus. I had never heard of the word and it sent me into a panic. The next day we named him Hiro, which means vast in Japanese, we thought the name was very fitting!
Diagnosed at 3 Months
Wylie
Story Written by Mother
Family members and friends remained very confused about Wylie’s condition. It was from that point on that my husband and I would make it our mission to educate others on hydrocephalus.
Diagnosed at 10 Months
Olivia
Story Written by Mother
Olivia had Grade III intraventricular hemorrhages (IVH) – or brain bleeds – in both ventricles. Today she is a beautiful 7 year old who has the ability to open doors that will lead her over new horizons.
Diagnosed In-utero
Wyatt
Story Written by Mother
He’s the funniest, sweetest, most caring, and heartfelt little boy I’ve ever laid eyes on and I’m so proud of him.
Diagnosed at 3 Months
Christopher
Story Written by Author/Self
Having a shunt has made my life anything but boring, and adjusting to what I call, “life in low resolution,” was not easy, it has changed my life’s path, but it hasn’t ruined it.
Blair
Story Written by Author/Self
The author of Adolescence Interrupted, a coming-of-age memoir that serves as a motivational road map for anyone forced to confront the overwhelming reality of a daily existence without stability or safety nets.
Diagnosed at 19
Philip
Story Written by Author/Self
I was born with an eye condition called Congenital Toxoplasmosis. During the 1970’s doctors did not know much about the Toxoplasmosis condition. However they now know this condition does more damage to the body than just the eyes
Diagnosed at 4 Months
Lyra
Story Written by Mother
This is Lyra. She is a beautiful, sassy, and strong 3 year old who was diagnosed with Hydrocephalus.
Diagnosed at 1
Matthew
Story Written by Mother
Matthew needed additional brain surgeries to move the catheter into his ventricle where, unless a cure is found, it will stay for the rest of his life.
Diagnosed at 1
Maylee
Story Written by Mother
Maylee has an amazing, happy little personality despite all she’s been through. She is truly a tough little hydrocephalus warrior!
Diagnosed at 5
Logan
Story Written by Mother
In the end, we had no answer to what caused Logan’s acquired hydrocephalus but it didn’t matter, he can do anything he puts his mind to and Hydrocephalus will not stop him!
Diagnosed at 9 Months
Heather
Story Written by Author/Self
An MRI in January 2016 revealed a break in the catheter and I prepared myself for surgery number 5 in one year!
Diagnosed at 1 Month
Kaine
Story Written by Mother
On January 22nd my water broke with my second child. The problem: He wasn’t due until March 10!
Diagnosed at 2 Months
Charlie
Story Written by Mother
We had to make the decision to either deliver the boys to save baby ‘B’, or let him go, so that the other two could keep growing. We chose to deliver.