Our Hydrocephalus Stories

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

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.

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.

“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.”

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.

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.

We are determined to continue to raise awareness for hydrocephalus and help those impacted as much as possible.

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.

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.

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.

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

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

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

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.