Hallie was only 10 months old when she began to have seizures. Her mother, Kelly McKeithen remembers noticing it first around the time Hallie’s teeth started to come in.
“I didn’t recognize it was seizures right way,” she says. “She would just stop and stare for a few seconds and her jaw would slightly move.” At first, McKeithen thought the baby’s gums were itching. It wasn’t until the episodes happened with more frequency that McKeithen and her husband suspected seizures were the cause.
Because the McKeithens reside in China for work, they called a friend who is a pediatric nurse for advice. The nurse advised them to seek pediatric care immediately, as seizures are often associated with brain tumors.
The McKeithens flew to the nearest pediatric facility in Bangkok where Hallie underwent an MRI and was diagnosed with focal cortical dysplasia FCD. The McKeithen family was there for a month trying different medications and courses of treatment.
“The medications would work for a few days and then the seizures would come back,” said McKeithen.
They were then referred to the Brain Institute at Nicklaus Children’s Hospital, a leader in treating pediatric epilepsy. “We were referred to a very special nurse, Patricia “Pat” Dean. We communicated via email and kept in constant contact with her. We were sent back to China with a combination of seizure medications. “Hallie was having anywhere from six to 13 seizures a day and they were getting worse, says McKeithen. At that point, Hallie was having devastating grand mal seizures, could barely walk and needed constant attention.
When Hallie was 18 months old, the McKeithens flew to Miami to meet with the Brain Institute team at Nicklaus Children’s.
“As soon as we arrived, meeting with all the clinicians was eye opening, comforting and unparalleled,” said McKeithen. “They offered a sense of hope that was so reassuring. We knew we were in great hands.”
Dr. Ian Miller, pediatric neurologist, Dr. Sanjiv Bhatia, pediatric neurosurgeon, and Pat Dean, nurse practitioner, formed part of the multidisciplinary team that together created a care plan for Hallie.
“I remember thinking how hard it must be that they were living so far away and having to go through all of this with their little girl,” said Dean. Their faith truly helped but I knew they needed hope for their little girl. I kept in constant communication with them and followed their case until they were able to make it to Miami. It was the least I could do,” she said.
In January 2009, the multidisciplinary team at Nicklaus Children’s recommended Hallie undergo a two-stage surgery to gather more information on a lesion in her temporal lobe, an area that affects the nerves of the mouth. This specialized surgery consisted of implanting electrodes in the temporal lobe to gather information on what was causing the seizures. Hallie had a seizure on the operating table, so the team was able to determine the precise area of the tumor and the procedure was completed in one stage.
“We give a lot of thought to what we do and sometimes we are able to take a different course of action. In Hallie’s case we were fortunate that we only had to operate once,” said Dean.
“Hallie came out of surgery a new baby, said McKeithen. We are happy to share that Hallie had no side effects from the surgery and she was slowly weaned off all her brain medications. She has been medication and seizure free since!”
Now a vibrant 9-year-old, Hallie is an inspiration to families of children with epileptic seizures and the McKeithens hope their daughter’s story can be a message of hope to others.