Ten days after giving birth, Christina Chen, M.D., was feeding her newborn daughter, Grace, when the young child's arms and head suddenly began making brief jerking movements.
"It looked like a small seizure to me. But newborns do such strange things with their movements, I wasn't quite sure what to make of it," Christina says. A few minutes later, Grace did it again. And then again. "I knew immediately at that time that we had to take her to the hospital," Christina says. "She was having clusters of seizures."
Grace's first hospitalization at Mayo Clinic's Rochester campus, when she was only 10 days old, was scary for Grace, and for Christina and her husband, Aaron Chan. That's in part because all of Grace's lab tests, imaging studies and MRI scans looked normal. And while an electroencephalogram, or EEG, did confirm the seizures, it didn't pinpoint a cause.
"All we knew was that something was disturbing her brain's electrical activity," Christina says.
A fellow in Mayo Clinic's Geriatric Medicine Fellowship at the time, Christina began thinking back to her "distant knowledge of pediatric neurology" and coming up with a harrowing array of worst-case scenarios.
"My mind was consumed with questions, and I poured over literature and readings about pediatric epilepsy," says Christina, who's now a senior associate consultant in Mayo Clinic's Division of Employee and Community Health in Rochester. "I lost many nights of sleep either watching Grace's every movement or researching literature about her condition. I had never felt so helpless in my life."
The family's search for answers, and a diagnosis, began to take shape when Grace's care team in Mayo Clinic's Department of Neurology — who Christina calls "some of the most thorough, compassionate and intelligent people I have ever met" — took a closer look at Grace's MRI scan. The team, led by pediatric neurologist Lily Wong Kisiel, M.D., found an area over the right side of Grace's brain that didn't look right.
"It was so subtle that it was initially missed," Christina says. "All the EEG studies correlated to her seizures coming from that focal area of her brain."
With this new finding, Grace's care team felt confident diagnosing her with cortical dysplasia, which Christina describes as "basically an area of the brain where the nerve cells didn't migrate normally during development." As scary as that may sound to some, Christina says the diagnosis comforted her and Aaron. "We were actually overjoyed to hear this information," she says. "We had a diagnosis that was not terminal. We had answers."
They also learned that the only long-term treatment option for Grace's condition would be surgery. Naturally, the thought of Grace going through brain surgery at such a young age was terrifying for her parents.
"Cortical dysplasias are a notorious cause for seizures and will not go away unless removed surgically," Christina says. "But at least cortical dysplasia is something that is potentially treatable."
The family wouldn't find out for sure, however, until Grace got a little older. "The recommendations were to grow her a little more until she was at least 6 months old, ideally a year old," Christina says. "Her little brain at 10 days old was way too fragile for such a major surgery."
To help her get there, doctors prescribed medications to control Grace's seizures. They then allowed Christina and Aaron to take her home, where the next five months were seizure-free for Grace.
"We watched her grow each day," Christina says. "She was developing so well, smiling and laughing with us all the time. She loved people and being around strangers. We watched all her milestones evolve. She was rolling over, sitting by herself, trying to crawl. It was incredible."
All of that changed on the way home from a family trip to Chicago.
"Grace wasn't acting right in the car," Christina says. "She was staring off into space and wouldn't stop drooling. She looked a little swollen around the face and seemed like she was having a hard time breathing."
Christina and Aaron took Grace to a local emergency department where she was treated for what they believed was an anaphylactic reaction to something she ate. Grace recovered from the episode. She was soon discharged from the hospital and on her way back home with her parents. But the next day, her seizures returned.
"This time, she was in status epilepticus (non-stop seizures), and it went on for 45 minutes before we were finally able to control it," Christina says.
That incident, Christina says, marked the beginning of the family's "six-week nightmare" in the hospital with Grace. Doctors at Mayo initially had trouble getting Grace's seizures under control.
"The first week, we had to repeat all of her studies," she says. "She had wires hanging from every extremity. That made it difficult for us to hold her and comfort her. The whole time she was having seizures that required rescue medicines to stop them. Basically, by the end of the week, our routine was trying to get Grace to take naps because once she was awake, she would have seizures."
A week later, Grace's condition deteriorated to the point that she required a breathing tube and was transferred to an intensive care unit, where she was put on a continuous drip of medication to stop her seizures.
"This was probably one of the darkest and most difficult times Aaron and I have ever gone through," Christina says.
Through their church, Christina and Aaron had come to know Sheri Crow, M.D., a pediatric intensivist at Mayo Clinic who happened to be working in the ICU the week Grace was admitted.
"She treated Grace with the utmost, thorough care, and provided our family with such amazing support," Christina says of Dr. Crow.
After Grace was stabilized, her first brain surgery would come much sooner than expected, due to the growing severity and frequency of her seizures.
"Aaron and I were so grateful that we were receiving care at Mayo Clinic, because I don't think things would've been expedited so quickly at any other institution," Christina says.
Grace's first surgery, performed by Nicholas Wetjen, M.D. in the Department of Neurosurgery, took approximately four hours. After the procedure was finished, Christina says she was just happy to see her little girl still alive.
"Her face was a little swollen and her right eye was swollen shut, but she was extubated pretty quickly," she says. "She looked at us afterward and smiled a few times. Our hearts melted, and we were filled with hope that this was the end of it all."
As the family would soon find out, however, that would not be the case.
Despite the perceived success of Grace's initial surgery, her seizures returned a few days later, and they were worse than before. She began having seizures that would wake her from sleep, so she wasn't able to get a good night's rest. Sleep deprivation then made the seizures worse. Grace's care team ordered more EEG and MRI exams. Those exams showed that part of the abnormal tissue causing Grace's seizures was still inside her brain. That, of course, meant another surgery.
"They wanted to make sure that this was the only place of seizure focus, so after another week on the ventilator, she underwent a larger surgery, this time in a two-part process," Christina says.
It was during that surgery that Grace's neurosurgeons discovered there were more areas of her brain that were affected than originally thought. That meant Grace would need more surgeries to remove all of the abnormal tissue and ensure her seizures stopped for good.
All told, young Grace would have a total of six separate brain surgeries at Mayo Clinic. And while each one came with its own brand of complexity and uncertainty, taken together, they've helped Grace become a happy, healthy and seizure-free five-year-old. A five-year-old who, among other things, loves playing outside, going to zoos, eating vanilla ice cream and playing games on her iPad.
Grace also recently participated in her first play, graduated from preschool, and is preparing to start kindergarten this fall — just like other kids her age. For that, her parents couldn't be more thankful.
"Every year that passes since her surgery, I'm reminded of her miraculous recovery," Aaron says. "We really had no idea how she would recover. Now she is going to be starting kindergarten next year. She's a consistent reminder that anything is possible, and that we wouldn't be here if it wasn't for Mayo Clinic."
You can watch more of Grace's story in the video below: