Our Hydrocephalus Stories

Christopher, 46

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, 38

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.

Philip, 44

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

Lyra, 3

This is Lyra. She is a beautiful, sassy, and strong 3 year old who was diagnosed with Hydrocephalus.

Matthew, 9

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. 

Maylee, 16 months

Maylee has an amazing, happy little personality despite all she’s been through.  She is truly a tough little hydrocephalus warrior!

Logan, 9

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!

Heather, 30

An MRI in January 2016 revealed a break in the catheter and I prepared myself for surgery number 5 in one year!

Kaine, 9 months

On Jan. 22 my water broke with my second child. The problem: He wasn’t due until March 10!

Charlie, 11

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.

Taelley, 2 1/2

My identical twin girls Taelley and Pelley were born at 26 weeks 6 days. Too early!

Ziler, 5

Aqueductal Stenosis
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.

Livia, 8

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.

Annelise, 18 months

Aqueductal Stenosis

“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.”

Blythe, 10 months

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.

Robbie, 1

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.

Noelle, 5

Noelle’s is almost five. Thankfully her post surgery journey has been uneventful.
We are determined to continue to raise awareness for Hydrocephalus and help those impacted as much as possible.

Lucy, 17 months

Aqueductal Stenosis

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.

Ashley, 8

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.

Felix, 1

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.

Sofia, 8 months

“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.

Robby, 11

Congenital Hydrocephalus

Robby is a happy young man with an outgoing personality and a great sense of humor.

Rylie, 3

Bilateral Subdural Hematomas- cause of bleeds- unknown

Rylie is a bright and bubbly 3 year old who loves to laugh and play.

Meryl, 2

Aqueductal Stenosis

She is an incredibly smart, active two year old with a great sense of humor.

Amanda, 22

Congenital Hydrocephalus

I am so blessed to have such a diagnosis- it makes me appreciate the good days, and makes me realize how valuable and precious health truly is.

Davison, 30

Malformation of ventricles at birth
Integration Technician and Photographer

From that last surgery at the age of eight, I have been in great health.

Christine, 48

Ideopathic Adult-onset hydrocephalus
Physical Therapy Assistant

I view the challenges I have faced as an avenue for opportunity.

Adult with hydrocephalus

Sandy, 58

Congenital hydrocephalus
Receptionist/Secretary

Sandy was diagnosed with hydrocephalus when she was 12, but not treated until she was 18. She is in the group of first generation hydrocephalus survivors!

Toddler with hydrocephalus

Layla, 2

Congenital hydrocephalus

Layla was born with an Occipital Encephalocele which caused her hydrocephalus. She’s a happy toddler, hitting her milestones and bringing joy to her family after a successful shunt placement.

Teen with hydrocephalus

Edgar, 17

Congenital hydrocephalus
Senior in High School

Because of my undying passion for aviation, I am planning to attend college to pursue an aviation Science major.

Young adult living with hydrocephalus

Brianna, 17

Congenital hydrocephalus with Dandy Walker Syndrome
Senior in High School

With aspirations to become a doctor, Brianna refuses to let hydrocephalus run her life.

Cohen, young boy with hydrocephalus

Cohen, 20 months

Congenital hydrocephalus

Cohen was born with hydrocephalus and later diagnosed with a rare, sporadic cerebellar malformation called rhombencephalosynapsis associated with Gomez-Lopez-Hernandez Syndrome. But it does not stop him from being every bit of wonderful!

Robert, congenital hydrocephalus

Robert, 41

Congenital hydrocephalus
Grocery Clerk

At two weeks of age, I had my first shunt placed. I have been blessed to be alive for 41 years and counting.

Travis , adult with hydrocephalus

Travis, 28

Acquired hydrocephalus from a brain bleed
Bachelors in Social Work, currently not working

Throughout my lifetime I’ve had three types of shunts and seventy plus shunt revisions.

Young boy with hydrocephalus

Oliver, 4

Acquired hydrocephalus from a brain tumor

He doesn’t let any of this slow him down. He loves going to preschool, and playing with his little sister, Kate.

Young adult living with hydrocephalus

Melinda, 30

Congenital hydrocephalus
Occupational Therapist

In the summer of 2013, my symptoms escalated to having migraines every day, urinary incontinence, vomiting, and severe neck pain.

Young adult living with hydrocephalus

Jessie, 19

Acquired hydrocephalus from a brain bleed
College Student

I’ve decided to share my story in the hopes that by talking, we can end the negative stigma around differently-abled people.

Lars, toddler with hydrocephalus

Lars, 20 months

Congenital hydrocephalus from a brain bleed

Lars spent 114 days in the NICU and went through 6 surgeries while there.

Share Your Hydrocephalus Story

Merlin, 60

Normal Pressure Hydrocephalus
International Flight Attendant

At this point I was having problems walking, lost my short term memory and I had incontinence all associated with Alzheimer’s…I only weighed 84 pounds.

Brianna, 8

Acquired hydrocephalus from a brain injury from being shaken
Elementary School Student

Brianna is the greatest gift we could ever ask for. We consider ourselves the very proud parents of a survivor who wants to and will change the world.

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