Sitting on her father’s lap, 19-month-old Grace Galloway reaches over and pulls her twin sister, Faith, in to plant a kiss on the side of her head as Faith squeals with delight. The little blond girls look very similar except for a big red scar in the shape of a T that covers the right side of Faith’s head where surgeons at Children’s Hospital of Georgia went in and effectively disconnected the right side of her brain.
And her mother, Jacel, “couldn’t be happier” with the end result – an end to the seizures that at times hit her 200 times a day.
Faith received a surgery called a functional hemispherectomy, where surgeons cut the connection between the two hemispheres of the brain in hopes of keeping seizures that begin on one side of the brain from crossing over. There are only “a handful” of epilepsy programs in the country doing the surgery, said Dr. Cole Giller, the director of Functional and Stereotactic Neurosurgery at Georgia Regents Medical Center, who helped perform Faith’s surgery. In fact, when the Galloways were looking to find a place that could do the surgery, “it was here or Arizona,” Jacel Galloway said as they sat in an exam room at Georgia Regents.
Even in terms of the children who have gotten the procedure, “very few have been this young,” Giller said.
The girls were born prematurely at 29 weeks in March 2012 and even before birth Faith was showing signs of hydrocephalus, or excessive fluid in the brain. The seizures probably started nine months later but it wasn’t apparent at first what the twitching was, Jacel said.
“We thought it was gas pains,” Jacel said. When a doctor told them Faith needed to be checked for seizures, “the whole world crumpled.”
Medication didn’t stop the seizures and they were beginning to take a toll on the little girl.
“She hit her head all the time,” Jacel said. “It was heartbreaking.”
She would hit some developmental milestones but then regress.
“She went for two weeks saying Mama. Mama, mama, mama. I was so excited. And then it was gone,” Jacel said. “She would learn to roll over and start pushing herself up to sit up and then it was gone.”
Desperately the family searched for help in Atlanta but found none, she said
“Before we came here they told us there was nothing we could do and that we were going to live with it,” Jacel said.” That’s almost a parent’s worst nightmare.” They refused to believe that was true and through Internet searches found Dr. Yong Park, the director of the Pediatric Epilepsy Program at Children’s Hospital of Georgia. And though he was able to reduce the seizures to 20-25 a day, “that’s a ton of seizures,” Giller said.
Through a careful work-up by Park and others, they were able to find that the seizures began on the right side of the brain and flashed over to the left, which is “the ideal condition for a disconnect,” Giller said. A positron emission tomography or PET scan that looks at the activity of cells found decreased function on the right side of the brain, he said.
“The only thing it was doing was seizing,” Giller said. Areas of the brain like her right side that are under a constant barrage of seizures are not developing properly anyway so the brain may already be trying to compensate, said Dr. Ian M. Heger, the chief of Pediatric Neurosurgery at Children’s Hospital of Georgia.
“A lot of times with these patients, the functions get dispersed to other parts of the brain anyway,” he said.
But the surgery also has risks that need to be weighed. The child would be less than 20 pounds and blood loss could be an issue among other possible complications, Giller said. In a review published this month in the journal Epilepsia, of 115 of its patients that had the same procedure, Cleveland Clinic found that young age at the time of surgery was associated with some poor outcomes. But it is precisely because of this young age that Giller and Heger believe Faith can improve.
“The younger they are, the more plasticity they have in the development, particularly when it comes to things like language,” Heger said. “It would seem to me that the earlier you can do it safely, ultimately the better the developmental outcome for that child.”
Just stopping the seizures can be important for development, Giller said.
“Not only are the seizures bad for development but the medications are terrible, the medications are toxic,” he said.
In a roughly 10-hour procedure last month, Heger and Giller removed the right temporal lobe, cut through the frontal lobe to disconnect the right side and then cut the corpus callosum, a thick bundle that connects the two hemispheres.
The results were immediately apparent to her parents when Faith opened her eyes after the surgery. Before Faith “would just stare off into space,” Jacel said. “I don’t remember a day she actually looked at you, it’s like she was looking past you.”
But now, “there was a clarity I had never seen before,” she said. “Right away. It was amazing.”
“It was like she was seeing for the first time,” said her father, Chad.
And the best part is no seizures since the surgery.
Now the little girl seems to be making up for lost time.
“She’s just wired now, just laughing, playing,” Jacel said. “We have to take her out of the nursery at night because she’ll wake up Grace. She wants to go places, do things. She’s been a little active before but nothing like this.”
There might be a simple explanation for that, Heger said. All of that energy consumed by the brain and body enduring seizure after seizures is now available for something else.
While Faith is still a little behind and is working to gain use of her left hand, she is making steady progress, Jacel said. Part of that is her sister.
“I think part of Faith getting better is having Grace with her,” Jacel said. “Grace really takes care of her and loves her to pieces.”
But the parents also credit God for getting her the right help.
“You just have to have faith that God is taking care of it,” Jacel said. “It gets better and better. She’s so much better off than she was before. It’s amazing.”