Kindergartner remains seizure-free a year after surgery

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

When Aurora Kalberer started suffering unexplained falls two years ago, her mom, Arianna Sullivan, naturally began to worry.

Aurora was 3 (she will turn 6 in May) when a fall in her northern Indiana home left her with a bump on her head, so her mom watched her for signs of concussion.

When the little girl’s breathing became irregular, Sullivan called an ambulance, which transported her to a hospital close to home. Soon, however, she was taken to Riley Hospital for Children in Indianapolis for further evaluation and was diagnosed with Sturge-Weber syndrome with related epileptic seizures.

Although Aurora already had a birthmark on her face called a port-wine stain that can be indicative of Sturge-Weber (a congenital disorder characterized by abnormal blood vessel growth on the brain’s surface), she was “a normal healthy child” up to that point, her mom said. Aurora’s father is Ryan Kalberer.

The disorder, which typically causes seizures, stroke-like episodes and cognitive impairment, can sometimes be managed with medication, but in the year after her diagnosis, despite treatment, Aurora suffered more “drop seizures” – brief, sudden episodes characterized by a temporary loss of muscle tone and consciousness and often leading to other injuries.

Surgery was recommended in consultation with the entire Riley epilepsy team, including epileptologists, neurosurgeons, neuroradiology and neuropsychology during the group’s weekly comprehensive epilepsy case conference.

Dr. Makram Obeid, Aurora’s epileptologist, and Dr. Jason Chu, her neurosurgeon, were confident that a type of surgery called a laser corpus callosotomy in which the two hemispheres of the brain are disconnected would help their patient, though the results were even better than expected.

“She did amazing,” Dr. Chu said.

In cases of Sturge-Weber, blood supply to the brain is disrupted and patients over time suffer something like mini strokes. Typically, the episodes are confined to one side of the brain, so when it becomes drug-resistant (cannot be controlled with two or more medications), a hemispherectomy (removing one side of the brain) may be done, or the two sides are disconnected.

“Her condition was even more unique in that she started having abnormal electrical activity from the other side too, not only the side where we thought she had the disease,” Dr. Obeid said.

On April 11, 2025, a then 4-year-old Aurora underwent a laser corpus callosotomy, during which Dr. Chu used MRI-guided laser heat to ablate or “burn” the corpus collosum, the tissue connecting the left and right sides of the brain, so the two sides could not “talk” to each other anymore.

The idea is to prevent any seizures on one side from spreading to the other, thus reducing their impact, explained Dr. Obeid.

While a traditional corpus callosotomy requires a large incision in the skull and removal of bone, the laser procedure achieves the same positive results with very tiny incisions and shorter recovery time. It is still relatively new but is becoming more popular, Dr. Chu said.

In deciding to proceed with the surgery in consultation with Aurora’s family, the team had two goals: improve Aurora’s quality of life by ending the seizures and associated injuries suffered during drop attacks; and isolate which side of the brain any new seizures might occur.

While the surgery is not a cure per se, it has worked wonders for Aurora, according to her mom.

“She is thriving,” Sullivan said about her little girl, who is finishing kindergarten this spring.

A year out from surgery, she has had no seizures in that time (compared to six to eight a day previously) and has recovered some of the skills she lost amid the seizures.

She is able to write her name again, knows the alphabet and can count. Her language is improving, and she is learning bigger words, Sullivan said.

Improvements in her neurodevelopment are consistent with expectations post-surgery, Dr. Obeid said, though he would not rule out more treatment down the road.

“Stopping the seizures not only improves quality of life with fewer attacks and falls, but also by stopping the seizures she gets the best potential for neurodevelopment. We expect improvement because the price you pay for the seizures is much higher than the price you pay for a small cut (in surgery),” he said.

Dr. Chu agrees, saying many patients with epilepsy are at a critical stage of brain development and the abnormal electrical activity often prevents the brain from growing as it should.

“Once we get the seizures and Aurora’s drop attacks stopped, the brain development can increase exponentially. It’s remarkable to see how kids like Aurora bounce back so well after surgery … and make up for lost time.”

Though she might need further treatment down the road if her seizure activity returns, for now Aurora is a definite success story, Dr. Chu said.

“The goal of the Comprehensive Epilepsy Team here at Riley is to give kids with debilitating epilepsy options for getting their seizures under control and allow them to live the best life possible,” the neurosurgeon said. “Surgery can always sound scary, but we do it in the safest way possible for our patients.”

Riley has many tools and treatments available for children with epilepsy, he said, encouraging parents to ask questions.

“If medications aren’t working well, I think it’s reasonable to ask if there is a surgical option to help get the seizures under control. Riley is one of the centers in the country now pushing the envelope for treatment for epilepsy,” Dr. Chu said. “Our approach here is inclusive – the patient, families and doctors all are involved in the decisions. We’re in this as a team,” he added.

“Every patient seen in our combined clinic is evaluated by multiple specialists and reviewed as a group. Not only are we at the forefront of treatment for epilepsy and provide high-level care for our patients with epilepsy in Indiana, but we’re also innovating and making advances in the best way to treat epilepsy, whether it’s surgery or medicine,” he said. “We are participating in research and multi-center studies to help the community understand the best ways to treat children with epilepsy.”

Thanks to that care, Aurora is pretty much living her best life right now, her mom said, describing how her daughter loves playing outside with bubbles and chalk, how she adores her three cats and how she gets lost in the world of Gabby’s Dollhouse.

“She is resilient and a go-getter. She does not let anything keep her down,” Sullivan said. “We got her an epilepsy helmet because she’s always on the go, but she’s tough. She’s also very vocal – it’s her way or the highway.”

Aurora still sees several specialists at Riley, including neurology, dermatology and ophthalmology, so it’s a good thing she enjoys the visits, it seems.

“She loves going to Riley,” Sullivan said. “She loves that hospital more than any kid I’ve ever seen. It’s like her second home. We are extremely grateful for everyone there.”