Our Hydrocephalus Stories

In Memory Of Skylene, 10

At 26.5 gestational weeks, I went into the hospital due to preeclampsia. Ten days later, on the evening of November 19, 2004, the doctor decided it was time to deliver my baby, as they could not control my blood pressure. Skylene was given an 80 percent chance at life being born premature at 28 weeks. […]

SYS - Ft image Mary Sullivan

Mary, 57

I joined the Peace Corps and taught high school Math in Morocco and Kenya. My school in Kenya was at about 10,000 feet. I don’t know if the elevation attributed to the increase in symptoms or not, but within 6 months I experienced a variety of new symptoms.

Tracy, 38

We are not sure if I was born with hydrocephalus or when it actually developed, but my condition didn’t rear it’s ugly head until one morning when I was 23 years old that I woke up and drove to work.

Rafael, 27

Rafael is a PhD student in Learning, Design, and Technology. He is currently developing a narrative video game to discuss “hidden disabilities”, focusing on his own experience with hydrocephalus!

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.

Cayden, 11 months

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

Deborah, 59

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

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.”

Alexsis, 18

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

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!

Luna, 18 months

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

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!

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.

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.

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.

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.

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