Seizure-free Stella Celebrates Life After Hemispherotomy Surgery
Stella was just four months old when the physical therapist she was seeing due to her premature birth noticed she was not moving her left arm well.
Her parents Michelle and Patrick made an appointment with Lurie Children’s Division of Neurology, where Dr. Denis Altman scheduled an MRI. The scan revealed that Stella had suffered a stroke before she was born, damaging a large part of the right side of her brain. Equipped with this information, Dr. Altman prepared the family to watch out for seizures or other issues that could result from this abnormality.
When Stella was seven months old, she developed infantile spasms, a type of seizure that happens in babies. Stella’s eyes would roll up and her arm would stiffen for a few seconds. Michelle returned with Stella to Lurie Children’s, where her diagnosis of infantile spasms was confirmed. Stella began taking different medications to stop the seizures, under the watchful management of the pediatric epileptologists in the Comprehensive Pediatric Epilepsy Program.
After two months, medication didn’t seem to be working, and the baby girl was having up to 300 spasms each day.
“It was a scary time,” Michelle said.
The epileptologists in the Comprehensive Pediatric Epilepsy team at Lurie Children’s recognized it was time to draw upon more of the toolkit against epilepsy. At the weekly multidisciplinary pediatric epilepsy conference, Stella's case was discussed in detail with all members of the team, including epileptologists, neurosurgeons, neuroradiologists, neuropsychologists, and other pediatric specialists. The team knew that neurosurgery would give Stella the best chance at controlling her seizures. They explained the conference discussion to the family. The baby, the family found out, was a good candidate for a complex procedure known as a hemispherotomy. Lurie Children's is one of the few places in the world offering endoscopic hemispherotomy surgery, which is done through a much smaller opening with the aid of a surgical camera called an endoscope. Benefits include less blood loss and faster recovery.
In this procedure, the half of the patient’s brain where seizures originate is disconnected or removed. Because Stella would be just nine months old when she would have surgery, the untouched side of her brain would compensate well and take over many of the functions of the side that was disconnected. When Stella's family thought about the alternative, which was hundreds of seizures a day, they knew that surgery was the best chance at giving Stella the life they hoped for.
Dr. Sandi Lam, head of the Division of Neurosurgery at Lurie Children’s, and her team have significant experience with this rare surgery. She is one of 3 pediatric neurosurgeons in the world who performs the hemispherotomy surgery minimally invasively, with an endoscope.
In preparation for the procedure, Daisy Vazquez, APRN-NP, CPNP, Lurie Children’s nurse practitioner/epilepsy surgery program coordinator, became the family's tireless navigator, advocate and cheerleader. Stella and her parents met with the Pediatric Physical Medicine and Rehabilitation specialist team to understand the anticipated needs in advance of the procedure. In the background, Lurie Children’s pediatric anesthesia and operating room teams further made plans to ensure Stella would have a safe and smooth procedure.
In February 2022, Stella underwent the over five-hour surgery.
“We were so worried, but in the end, we felt blessed to have the opportunity to have this surgery with Dr. Lam,” Michelle said. “Dr. Lam was amazing in every single way, and we know it was the best option for our daughter.”
As pre-arranged, following surgery, Stella underwent intensive inpatient physical therapy at Lurie Children’s neighbor in downtown Chicago, Shirley Ryan AbilityLab, the No. 1 ranked physical medicine and rehabilitation hospital in the U.S.
Three weeks following surgery, Stella returned home, continuing occupational and speech therapy on an outpatient schedule.
By the end of April, Stella’s family celebrated her first birthday and another important milestone: being seizure free for 3 months.
“We had so much to celebrate at her first birthday party,” Michelle recalls.
Michelle and Patrick know Stella has a long road ahead of her which will include continued therapy to learn to compensate for narrowed left sided vision and for the left hand being the less preferred hand, which are anticipated small trade-offs of the procedure aiming for seizure freedom. They celebrate the enormous success of the surgery, and that their smiley baby girl has not had a single seizure since surgery.
“Every day I see her, and I thank God and pray for one more day without spasms,” Michelle said.
Watching her happy girl, Michelle said her experience with Stella’s condition helped her family learn the importance of taking life one day at a time and appreciating what they have.
“It sounds funny to say because of all we’ve been through, but we feel so lucky,” Michelle said.