Radical brain surgery treats infant's epilepsy

At the tender age of six months, doctors diagnosed Joscelyn Dempsey with a congenital  brain defect known as hemimegalencephaly, where one side of the brain is abnormally large and results in severe epileptic seizures.

Only a knit cap offers any clue of what the 14-month-old Joscelyn has been through in recent weeks.  When we caught up with her at her Mount Dora home, her attention was fully focused on a baby music video.  Just like any other child her age, Joscelyn loves to learn via video.   It's hard to believe that, just last month, her parents were faced with the possibility she would never really learn anything. 

Mom Jennifer Dempsey explained how the decision to allow doctors to perform complex surgery was made.  "We could either do this, or she would end up probably severely disabled, not able to walk, not able to talk, possibly not able to recognize us and possibly with a shortened life span.  So, in facing that, there really is no question."

Jennifer removed her daughter's knit cap revealing a scar that around the entire side of Joscelyn's little head.  Surgeons at Florida Hospital for Children removed nearly half of their daughter's brain -- the half causing the debilitating seizures that would have robbed Joscelyn of her life.

"The left side of her brain was abnormally large and malformed, due to a congenital birth defect," Jennifer said.  "So it was causing her to have epileptic seizures."

Her seizures are the kind that typically don't respond to medicine, so it takes a neurologist and a neurosurgeon to perform the cutting-edge surgery to save Joscelyn's life. 

Florida Hospital's Dr. Ki Lee is the neurosurgeon who specializes in children's epilepsy.  He designed Joscelyn's treatment plan, including a complicated surgical procedure known as a hemispherectomy.

"Functionally, the whole hemisphere is disconnected," he said.  "Anatomically, one half of the left hemisphere is gone, functionally, the whole hemisphere."     

Joscelyn's parents gave Dr. Lee permission to share their daughter's story.  In brain scans taken prior to surgery, Dr. Lee shows us how the left side of Joscelyn's brain is larger than the right.  After surgery, a scan shows that a large part of her brain is missing -- the part removed during surgery. 

As we get older, our brains become fully formed and lose some of its ability to repair itself.   However, doctors have discovered that the brains of young patients have much neuroplasticity, or the ability to mold and change; thus, the half of the brain which remains has the ability to compensate for the half which is removed.

"The right brain will take over whole brain function in time," said. Dr. Lee.  "I expect she'll be able to walk, run, talk, dance, sing, everything!"

Lee designed the roadmap for the surgeon, who strategically cut into Joscelyn's skull in a wavy motion, to allow for her hair to grow back in a way that will eventually cover the scar.

It took three separate surgeries to successfully remove all of Joscelyn's "bad" brain.  Just two weeks ago, to the big relief of big brother Jackson, little Joscelyn came home.

"There aren't many neurological diseases that physicians can cure," said Dr. Lee, "but this keeps me going."  

And the prognosis is a turnabout as radical as her life-saving surgery.

"Physically and mentally, there are really no definitive limitations they can put on her!" Jennifer said of her daughter.  "To go from the possibility of being severely disabled, to not being held back in any kind of a way, it's incredible!"

Dr. Lee advises anyone who is dealing with epileptic seizures to ask their doctor to refer them to a neurosurgeon, adding that it could be the difference between a limited life and a full life, or even life and death.

Florida Hospital for Children is the only hospital in Central Florida that does hemispherectomies.

You can follow Joscelyn at JoscelynsJourney.wordpress.com and on Facebook.