Hydrocephalus Story

Hydrocephalus Story

Before I write this story, I just want to say I’m not looking for ones pity. Meaning, “oh Kacie you have been through so much” or on the flip side, “Kacie you are so strong” because I’m just a girl who is trying to keep her head above water.

Cameron.

I had a very rough pregnancy. Around the clock, I would stay with consist morning sickness. I love pregnancy but pregnancy didn’t love me. I ended up staying two weeks in the hospital because I developed toxemia and the baby’s placenta was starting to shrink. Which resulted in delivering a 2pound 10 once baby boy named Cameron. At first, Cameron was transported by ambulance to a better equipped hospital, because he had problems breathing on his own. I remember seeing his face and vaguely being able to touch him, much less holding my baby for the first time. Three days later, I was released and having not yet being able to bond with my baby. I didn’t know what to expect walking into the NICU for the first time. As a mother, it is your biggest fear to watch your baby hooked up to countless numbers of tubs, before your eyes.

A week went by and the doctors began to explain an abnormality in Camerons head. I believe the conversation went something like, “each day the babys head is getting bigger and bigger” To be honest, when you hear the word, “abnormality” everything else fades into the background. It’s kind of like the word, “cancer” your heart just stops. A million and one questions go through your mind. Questions of, “will my baby know the difference between an apple and an orange” or most importantly, “will he make it through this” these questions stayed on repeat.

After test came back we met with a neurosurgeon. He began to explain that Cameron had suffered from a brain hemorrhage, more than likely from trauma at birth from a brain bleed, which caused post-hemorrhagic hydrocephalus.

Nothing at all can prepare you for doctors throwing disabilities terms at you, much less, terms you couldn’t understand. At the time, they swore Cameron would have cerebral palsy or some sort of retardation. As a mother you can understand the emptiness I was feeling. I was his mother and a protector, but there I was helpless. Completely helpless.  My husband was dealing with his in the worst way possible. He closed the door on support and didn’t allow anyone in. Not even me.

Thankfully enough I had support of my parents and my best friend at the time. Cameron had his first brain surgery for shunting the excess cerebral spinal fluid build up caused by a blockage from his brain bleed. Below is a picture of the little guy after his first surgery. Here he was looking up at me like, “Here I am mommy, you will be able to hold me soon”.

Prior to his temporary shunt, his next surgery would consist of a VP shunt, which will always be apart of him. You see, Hydrocephalus is a life-long, life threatening neurological disorder that is treated by a shunt and is connected by a tub, that runs down into his abdominal, but there is no cure for hydrocephalus.

Cameron was kept on several different medications during the first six months of his life. He also was scheduled to many therapy sessions, known as “kids team” under the care of a neurodevelopmental therapist.

It was a very trying time, at which I moved in with my parents the first year of my babys life. My mother graciously quite her job to help take care of Cameron full time. I will always be grateful for that time she was able to spend with my son.

Overtime, we have been to numerous emergency rooms in fear of a shunt failure, but we have always been lucky that it was something minor, as in a cold or mild sickness.

Today Cameron is a healthy growing boy and to look at him you would never suspect his near death experience or long hospitalization due to hydrocephalus. At 10 years old Cameron has no signs of hydrocephalus.

Please stay tune as my story will continue …

Thanks for reading,

Kacie

3 Comments

  1. September 2, 2017 / 6:59 pm

    Hi Thanks for sharing your story. My 25 weeks premature baby has developed hypo after grade 2 brain bleed. He had a temporary shunt inserted. I hope he doesn’t need a permanent shunt around his due date.

    • Kacie
      September 6, 2017 / 7:47 pm

      Hi Siuha, how are you and the baby? Don’t get to nervous yet. I will add you and the baby to my prayer list. I would love to keep in touch with your journey.

      best,
      Kacie

  2. September 2, 2017 / 7:00 pm

    I meant hydro, sorry for the typo

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