November 23, 2015

Wow. Three years ago today. I vividly remember driving to the hospital with Jason in the front seat. We pulled up to the stoplight at Park & Woodlawn, just a few minutes away from Levine’s at this point, and I look over and he started rolling in and out of consciousness. I frantically grabbed my phone and dialed 911, but didn’t press “call”  because I knew I could get him there faster than an ambulance could get to me.

Hydrocephalus is a scary, incurable disease that can only be treated by brain surgery. Defined by the Mayo Clinic as “the buildup of fluid in the cavities (ventricles) deep within the brain.” This excess fluid increases the size of the ventricles and puts pressure on the brain, which can be deadly and cause irreversible brain damage.

Let’s hit rewind here.

Jason was born on January 21, 2005 relatively “healthy”. He was born missing nearly 50% of his brain due to a cyst doctors originally diagnosed as Schizencephaly. Fortunately, Jason suffered no seizures and was able to come home from the hospital after a few short days. Levine Children’s hospital didn’t exist back in 2005, so our neurologist in Charlotte referred us to a specialist at UNC Chapel Hill who had experience in the extremely rare brain anomaly Jason was diagnosed with. The neurologist in Chapel Hill changed Jason’s diagnosis after an MRI to a Porencephalic cyst, which is also an extremely rare brain anomaly according to NINDS.

As a result of his cyst, Jason has Hemiplegic Cerebral Palsy. He lacks complete control over the left side of his body, but with lots of therapy and determination on his part, he has gained significant use of it and continues to improve every day.

Fast forward 10 years

Jason has lived a relatively healthy life. A few years earlier, he developed sporadic vomiting episodes, but his doctors were unable to pinpoint the issue.  MRIs were negative, showing no material signs of swelling or hydrocephalus — common with porencephaly, but typically occurring at a very young age. His vomiting continued for well over a year, and we had no answers.  It was an extremely frustrating and helpless time in our lives. Nothing in this world is worse than seeing your child like this, and having no explanation. Our stress and anxiety were at an all time high, traveling back and forth to Chapel Hill.

In March 2015, he was at his worst. He was still vomiting, but also developed phantom leg pain and was completely lethargic.  Our pediatrician was stumped and could come up with no other explanation other than it must be neurological. We traveled back to UNC and his neurologist decided to admit him, as this was the fastest way for him to get an MRI and the help he needed.


After nearly a week in the PICU (Pediatric Intensive Care Unit) at UNC Children’s Hospital, he was finally diagnosed with hydrocephalus and an underwent an emergency shunt procedure.  

What is a shunt?

“Shunts have been used to treat hydrocephalus for more than 50 years. The devices allow excess cerebrospinal fluid to drain to another area of the body.” {}

A shunt is an external medical device placed inside the noncommunicating ventricle to drain the excess fluid. In Jason’s case, his shunt was a VP (ventriculoperitoneal) shunt and it went from his brain into his belly.

While we were relieved to have clarity, Jason’s relief was short-lived. Within weeks, we were back in the ER on a regular basis with the same symptoms as before. With the strain of travel to Chapel Hill, and with specialized resources now available through Levine Children’s Hospital, we transferred his care to local pediatric neurosurgeon Dr. Scott Wait.

3 years ago today Jason had his last shunt surgery. I wish I could say this was the end of his journey, but it was not. This also was short lived.

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2 Replies to “November 23, 2015”

  1. Hi Meghan! You already know that you have more strength in your pinky than most can muster out of their entire being. You are a believer and the most amazing woman I know. Would you be able to share this story or may I do new mom’s are going to their OBGYNs and learning that their baby either has a cyst, or hydrocephalus or a brain bleed? I ask this bc so many mom’s are inventing the wheel when you already have a support group of love in the making.

    1. Shelley, of course! I am always happy to connect with other families. Jason’s neurosurgeon gives my phone number out to families undergoing similar surgeries. I love being able to connect with other people and would love nothing more than to create a support group out of this!

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