Our hydrocephalus story

We are the Whitacre family from small town Ohio, USA. 

Our story is slightly different from most. My pregnancy was very normal, no complications, all of our scans came back perfect. Our sweet Elyse made us a family of 5 on November 11, 2018 at 38 weeks. This is when everything changed.

As soon as she was born and handed to me I knew something was wrong. She was limp and not breathing. They soon took her from me and began resuscitation efforts. Once stabilized, she was transferred from our small rural hospital to a NICU in Cleveland 1.5 hrs from home.

We soon learned that she had multiple congenital defects including narrow nasal passages which caused her to not be able to breathe. At just 9 days old she underwent a procedure to widen the nasal passages. This is when our journey with hydrocephalus began.

A few days after her procedure we learned that a brain injury occurred during the surgery which led to seizures and ventriculomegaly. Our neurosurgery team watched her very closely for several months hoping things would correct on their own however when she was 5 months old the decision was made to complete an endoscopic third ventriculostomy (ETV). During this procedure they discovered a lot of scar tissue in the subarachnoid space limiting her ability to reabsorb CSF. About 6 weeks after this the ETV failed and a VP shunt was placed. She’s had her shunt for over a year now and is progressing wonderfully since.

So far no revision surgeries have had to be done however we’ve had multiple hospitalizations due to complications. She has a programmable shunt and so far just a few setting adjustments have corrected the issues. She is about 6 months behind developmentally and is currently receiving physical, occupational, and speech therapy services.

I think the hardest part right now is her not being able to communicate to us what hurts or what is wrong and having to guess if it’s a shunt issue. I’m hopeful that during her lifetime a cure for hydrocephalus will be found.

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