Hydrocephalus Stories from Our Community
Read stories of people living with hydrocephalus (Patients and Caregivers). These amazing individuals are living life to the fullest regardless of the challenges the condition brings. Want to share your own story of resilience?
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.
Diagnosed at 3 Weeks
Taelley
Story Written by Mother
My identical twin girls Taelley and Pelley were born at 26 weeks 6 days. Too early!
Diagnosed at 6 Months
Ziler
Story Written by Mother
At two and a half years old it was determined her ETV was not working any longer. She had her first shunt placed and a month later had her first revision.
Diagnosed at 3 Months
Livia
Story Written by Mother
Brain surgery is scary stuff. A new baby is scary stuff. 3 months in the NICU and spitting in the face of death are all scary stuff. Together they are absolutely petrifying.
Diagnosed at 5 Days
Annelise
Story Written by Mother
“During an emergency 18-week scan after sustaining a blow to my tummy, the technician had a very worried look on her face.,. It was there my fears went from bad to worse.”
Diagnosed at 2 Weeks
Blythe
Story Written by Mother
I had a very typical pregnancy with Blythe. She is my third child an not unlike her brothers. Blythe Raye was born at 40 weeks on October 24, 2016 weighing 7 pound 11 ounces.
Diagnosed In-utero
Robbie
Story Written by Mother
The words that stuck in my head were “there is still time to terminate the pregnancy”, but one thing that was certain was that God gave us this little boy and we were going to do everything in our power to bring him into this world and shower him with love.
Diagnosed at 1
Noelle
Story Written by Mother
We are determined to continue to raise awareness for hydrocephalus and help those impacted as much as possible.
Diagnosed at 1 Month
Lucy
Story Written by Mother
When Lucy woke up from surgery, she looked right at us and we couldn’t believe the immediate changes. A year later, we are revision free, she is doing wonderful and she is meeting her milestones.
Diagnosed at 2 Months
Ashley
Story Written by Mother
The doctor explained to us that Ashley’s brain was bleeding and not draining properly. She used the word hydrocephalus, which I’m pretty sure was the first time I had ever heard that word.
Diagnosed In-utero
Felix
Story Written by Father
People often ask us how we do it- how do we cope with all the surgeries? For us it is really very simple…you just do what you have to do.
Diagnosed at 1 Month
Sofia
Story Written by Mother
“So there was not going to be a magic pill, my 8lb, one month old little girl was going to be having brain surgery.” Those were the words of Sofia’s mom when she first learned that her daughter had hydrocephalus and was going into surgery the very next day.
Diagnosed In-utero
Robby
Story Written by Mother
Robby is a happy young man with an outgoing personality and a great sense of humor.