Hydrocephalus Stories from Our Community

Read stories of people living with hydrocephalus. These amazing individuals are living life to the fullest regardless of the challenges their condition brings. Want to share your own story of resilience?  Learn More

Abby, 22

In sharing my story, I hope to empower and inspire you to smile through your trials, whether they be with Hydrocephalus or any other challenges that you may face.

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Cayden, 11 months

Besides the Chiari 2 malformation, there was no sign of hydrocephalus. At 38 weeks, our beautiful baby boy Cayden was born.

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Deborah, 59

Knowledge is power and I believe it’s better to be educated than to go into something blindly. Particularly, brain surgery!

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Gabrielle, 25

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.”

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Alexsis, 18

I was born 3 months early at just 28 weeks and I have had more brain surgery’s than birthday’s!

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Vincent, 12

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!

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Luna, 18 months

Luna was born 7 weeks early and delivery went pretty well, and after 17 hours our baby girl was finally here!

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Hiro, 22 months

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!

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Wylie, 6 months

Aqueductal Stenosis

Family members and friends remained very confused about her condition. It was from that point on that my husband and I would make it our mission to educate others on hydrocephalus.

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Olivia, 7

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.

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Wyatt, 18 months

Congenital Hydrocephalus.

He’s the funniest, sweetest, most caring and heartfelt little boy I’ve ever laid eyes on and I’m so proud of him.

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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.

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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.

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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

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Lyra, 3

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

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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. 

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Maylee, 16 months

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

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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!

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Heather, 30

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

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Kaine, 9 months

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

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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.

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Taelley, 2 1/2

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

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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.

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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.

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