May 19, 2008 8:48 pm US/Eastern
Denise Koch's Blog About Jessie Hall's Story
BALTIMORE (WJZ) ―
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Some stories challenge a reporter's ability to keep their emotions in check.
Some stories challenge a reporter's ability to keep their emotions in check. The story of 6-year old Jessie Hall, for me, is one of those stories. Jessie was a perfectly normal, healthy 6-year old up until last August. She was with her family on a trip to a local lake near their home outside Dallas, Texas when she suddenly had a seizure. The seizure did not include convulsions or thrashing. Her parents say it was more like she simply 'disappeared' for eight minutes. Cris and Kristi Hall are extremely dedicated parents so they immediately began trying to find the medical explanation. At first they were told their daughter had epilepsy. They began pursuing a course of therapy along those lines until Jessie began exhibiting twitching in her face....and she lost control of one arm. The Halls, as most modern parents do, searched the Internet and found the disease Rasmussen's encephalitis. When they gave them that diagnosis they were devastated. Rasmussen's encephalitis is a disease that attacks one side of the brain. I
t is a neurological, auto-immune disease that destroys neurons and destroys function in the opposite side of the body. It only attacks children, young children. And there is only one treatment and that is a hemispherectomy, the removal of the diseased half of the child's brain.
Imagine the dilemma of this mother and father. They have to agree to a surgery that will remove half of their child's brain. Ironically, Jessie had always been the healthiest of their four children. Her twin brothers were born prematurely and spent time in the NICU. Her oldest brother, 10-year-old Matt, had had some health challenges. Jessie had always been phenomenally healthy. Until now. The Halls say when they received the final diagnosis, they had a mix of emotions. They were relieved to finally know what was going on with their daughter. They were also angry, saddened and in mourning for the future they had dreamed for their beautiful child. Then, after a few months to absorb the reality, they had to say 'yes' to the surgery.
Life with a child with Rasmussen's is difficult to say the least. She could have a seizure at any time so she has to be constantly monitored. She could have a seizure at night and vomit and aspirate and die. She could have a seizure many miles from a hospital so the Halls carry an emergency kit with anti-seizure medication. She cannot be out of their sight at any time. And as they watch her she continues to deteriorate. In the past few weeks her symptoms have increased dramatically.
The Halls have been very open about Jessie's illness. Her entire school and the community where they live in North Texas have rallied in support. Jessie knows everyone is behind her. Make-A-Wish sent the Hall family to Disney World and when they left the town had a send-off parade where everyone dressed in pink, Jessie's favorite color. The Halls insurance covers her treatment, and that is a blessing. Their family and friends are always there to watch the three Hall boys when the parents are off meeting with doctors. That, too, is a blessing. But nothing can help those moments when a parent just buckles at the thought of what their child must endure.
Research led the Halls right to Johns Hopkins and pediatric neurosurgeon Dr. Ben Carson. He will perform Jessie's surgery. Two decades ago Dr. Carson pioneered using a hemispherectomy to treat Rasmussen's. The surgery had been used in the past on adults with little success. But Dr. Carson was the first to say, let's try it on children. The plasticity of the child's brain and its ability to re-generate and adapt made a success possible. And, it has been very successful. Dr. Carson says in 80 percent of the cases children who have half their brain removed at a very young age go on to live a relatively normal life with little lingering side effects. Jessie's disease is on the right side of her brain so her left arm is paralyzed. It will likely remain paralyzed after surgery. When she first awakens after surgery she will be unable to walk, possibly paralyzed, but with therapy children are usually up and moving within a matter of weeks. Because the left side of the brain controls speech she should require no speech therapy.
Even though it sounds like a very radical surgery about 100 cases of Rasmussen's are treated with a hemispherectomy each year. Hopkins performs a dozen or so of those surgeries. Dr. Carson feels very optimistic about Jessie's chances for recovery. Her parents are frightened but confident they've chosen the best doctor. Jessie and her brothers try to ease their fears. Jessie knows at a six-year old level that she's going to have a surgery to stop her seizures and twitching and that she will go to sleep and Dr. Carson will take out half her brain. Her older brother understands a little more about the danger. He is trying, in big brother fashion, to calm his parents and be supportive of his little sister. Perhaps the only thing that can really calm Cris and Kristi is to have this all behind them.
Last week they visited Baltimore, met Dr. Carson, completed some more tests and scheduled a surgery date. It will be the second week of June. For now, they're back home in Texas finishing the school year. When they return they'll leave their boys with family and marshall all their hopes and positive thoughts and hand their precious baby to Dr. Carson and his team for a surgery that could take up to 10 hours.
Their dream? They dream that their daughter will be the shining example of total recovery from Rasmussen's. They dream for her the same things we all dream for our daughters: health, happiness and adventure. With all their love and dedication they deserve no less.
Our thoughts will all be with them in June. Our cameras will be there, too. We will air the next chapter in Jessie's story and we trust and pray it will be one that will have us all feeling grateful for medical miracles.
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