Toddler’s Journey to a Seizure-Free Life - Part 3 of 4

  • Scott and Ashley Grimes, Ella’s parents, comfort her before the hemispherectomy surgery to reduce or possibly eliminate Ella’s seizures.
  • Scott and Ella share a special father/daughter moment before Ella is wheeled to the operating room.
  • Child Life specialist Krista Stringer helps Ella to become familiar with medical instruments and procedures that she will encounter in the operating room.
  • Ella, who often pretends to be a doctor, listens to Krista’s heartbeat.
  • Anesthesiologist assistant Dr. Phuong Luong talks to Ella and her parents before surgery.
  • Anesthesiologist Dr. Wei Wei Boone lets Ella play with her stethoscope as a way to provide positive distractions.
  • Anesthesiologist Dr. David Bui points out an area on the scans of Ella’s brain in the operating room.
  • From left, Dr. James Botros, resident, neurosurgeon Dr. Angela Price and Dr. William Scott, fellow, perform the hemispherectomy.

A Fresh Start

Ashley and Scott met with Ella’s pediatrician who advised them to get her into the Children’s neurology program because of their experience, resources and cutting edge treatments.

“We collectively felt the Comprehensive Epilepsy Center at Children’s was the best place for Ella to fight the seizures,” Ashley said.

Dr. Susan Arnold, medical director of the Pediatric Epilepsy Center, would be Ella’s doctor at Children’s. After Ella’s first appointment, Ashley knew they had made the right decision.

“Dr. Arnold really took the time to go over all of Ella’s medical history, reviewed her MRIs with us and answered all of our questions,” Ashley said. “She gave us several options for trying to get the seizures under control: try a new medication, start the ketogenic diet, or we could have Ella evaluated for a surgery called a functional hemispherectomy.”

The diet would not be an option as Ella does not drink enough and after six failed medications, the chances of it working were slim. Further testing revealed that Ella would be a good candidate for the hemispherectomy to remove the affected part of her brain. The tests indicated that her seizures were originating on the left hemisphere where Ella’s original AVM rupture occurred, and she already had a portion of the left frontal lobe of her brain removed. This location of the brain affects speech, and Ella is able to talk, so the doctors felt that her speech might have transferred to the right hemisphere. Those factors matched with Ella’s young age meant the chances would be higher for the right side of the brain to take over functions typically performed by the left side.

At first, Ashley and Scott did not feel ready to consider the surgery, but after many failed medications, they decided it was time.

“When we found medications that worked to control her seizures, it was like Ella blossomed. She would make developmental jumps. Unfortunately, the medications didn’t work for long periods of time and the seizures returned. We had to look past our fears and realize that this was Ella’s best option to control the epilepsy and be able to live her life to the fullest,” Ashley said.”

‘We didn’t want to let her go’

On July 24 of this year, the Grimes family braced themselves for a life-changing day. Ella would undergo a four-hour procedure performed by neurosurgeon Dr. Angela Price that would hopefully reduce or eliminate her seizures.

“We were at peace on the day of surgery,” Ashley said. “But at the same time we were nervous and scared because we understood the risks and that there are no absolute guarantees. She is only 4 years old and was going into her second brain surgery. I remember Scott and I holding her tight, giving her lots of hugs and kisses and not wanting to let her go. When the anesthesiologist carried her back to the operating room, the emotions from her first surgery came back and we relied on our faith and our confidence in Dr. Price and her team to take care of our baby. We were fortunate to have the support of family and friends that did a great job taking our minds off of Ella’s surgery even if it was just for a little while.”

Read the conclusion of Ella's Journey

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Contact the Children's Epilepsy Center at Legacy