Jessie's Story
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Jessie's Story
courtesy of THE JOHNS HOPKINS CHILDREN'S CENTER MAGAZINE
Months of uncontrollable seizures and a diagnosis of the brain disease Rasmussen’s Encephalitis brought Jessie Hall of Aledo, Texas, to Hopkins Children’s in June for the most radical procedure in neurosurgery, hemispherectomy – the removal of half of her brain.
With Jessie’s hemispherectomy underway, parents Cris and Kristi Hall hold on. They know that the surgery will come with some costs to their child’s health, but they also know that it was the only weapon they had against what they call “TheMonster,” the inflammatory disease relentlessly attacking the right side of Jessie’s brain. Faith in their daughter’s neurosurgeon, Ben Carson, also gave them strength: “We expected a man 10-feet tall with a Superman cape,” says Cris Hall, “but what we found was a humble and compassionate man who only cared about our sweet little girl, and making her better.”
“Spunky” and “gregarious” are the words used by most people who cross Jessie’s path, says her dad, Cris Hall, on the morning of her surgery. “Her story is not a story of tragedy,” he stresses, “but of hope, the miracles of God and medical science, and of a brave little girl who may just defeat a disease that is threatening to take her life.” The surgery itself would likely leave the outgoing 6-year-old permanently disabled, but without it the disease would eat away at her brain and cause frequent seizures, paralysis, mental deterioration and possibly death.
In a 7-hour operation, pediatric neurosurgeons KhanWayne Li and Ben Carson remove the right half of Jessie’s brain to free her of the progressive degeneration caused by Rasmussen’s encephalitis. Two decades ago Carson pioneered the use of hemispherectomy to treat Rasmussen’s, and he was the first to say it should be tried on children, noting the ability of the growing child’s brain to re-generate and take over functions from the lost side. In 80 percent of the cases, he says, children who have half their brain removed at a very young age go on to live a relatively normal life with few lingering side effects.
During their stay at Hopkin's Children's Cris and Kristi Hall met other families of children who had undergone hemispherectomy and were inspired by their stories – so much so that they’ve created a foundation to support other patients through college scholarships and other initiatives. For more information, visit the Hemispherectomy Foundation website at: www.hemifoundation.org
Following her surgery, Jessie suffered some vision loss and weakness in her left leg and arm, and could not walk without assistance.Within two weeks of her surgery, however, Jessie showed signs of recovering her lost functions, thanks to physical therapy at neighboring Kennedy Krieger Institute. And on August 25, Jessie walked into her Aledo, Texas elementary school and first-grade class. Gratefully, note her mom and dad, she has not experienced any loss of cognitive thinking, memory or speech – and Jessie’s personality, as her puppy can attest to, is shining brighter each day.
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