Brenna spent three years as a neonatal intensive care unit (NICU) nurse. She knew what a seizure looked like.
Two days after her son Gunnar was born, she noticed something was not right and then came a seizure Brenna could not mistake for anything else.
“He stopped breathing then started seizing. It was one of the most terrifying things I have ever seen,” Brenna said. “As a NICU nurse, I cared for babies through moments like this and watched families endure the fear and uncertainty. But when it’s your own child, it’s completely different. Nothing in my nursing experience could have prepared me for watching my own baby go through it.”
Once Gunnar was stable, he was transferred by ambulance to a hospital close to the family’s home. He was admitted and monitored for 22 days before being sent home with information on what the family could expect — and when to call. Still, the seizures kept coming. More than 100 times a day, seizures moved through his small body, leaving little room for sleep, for feeding, for the ordinary moments of early life. Without intervention, those seizures could continue to steal his development, one milestone at a time.
“During that hospital stay, we knew we wanted a second opinion. Something in us felt that there had to be more that could be done to help him,” Brenna said. “We had originally been told that the seizures were unfortunately going to be part of Gunnar’s life and that we would likely need to manage them through medication. But that didn’t sit right with us. We couldn’t accept that this was simply how things were going to be, especially knowing how many seizures he was having each day.”
Shortly after Gunnar was discharged, Brenna and her husband, Ethan, sought a second opinion from Phoenix Children’s neurologist Kevin Chapman, MD. “I remember sitting in that appointment as he walked us through the different options available for children with epilepsy. For the first time, I felt relieved,” said Brenna.
That relief was short-lived. Just a few days after they met with Dr. Chapman, Gunnar had a seizure in the middle of the night that would not stop. Unable to watch her son struggle any longer, Brenna woke Ethan and said, “He’s not coming out of it.”
That decision would change everything.
Brenna placed a pulse oximeter on Gunnar to monitor his heart rate and oxygen levels, then the whole family packed into the car and drove to Phoenix Children’s at 3 a.m.. Gunnar was still seizing.
A Diagnosis No One Was Prepared for
The emergency department team took them back immediately. They did not wait.
“Everyone came running, took Gunnar from our arms and immediately got to work,” Brenna said. “We watched the team surround him, moving quickly and doing everything they possibly could to stop the seizure.”
At Phoenix Children’s, the family finally had a name for what Gunnar was facing: hemimegalencephaly. It is a rare condition in which one side of the brain grows larger than the other and does not develop as expected. That side of the brain can cause frequent seizures that are hard to control with medication.
Gunnar was admitted to the pediatric intensive care unit, where the team worked to manage his seizures. Brenna and Ethan stepped away to go home and get clothes. When they came back, Jason Hauptman, MD, PhD, division chief of neurosurgery and Caroline Hoeye Endowed Chair in Neurosurgery, was in the room.
He asked the family to sit down.
The Best Chance for Gunnar
Dr. Hauptman explained what they were facing. Along with the diagnosis of hemimegalencephaly, Gunnar also tested positive for a genetic variant associated with the malformation.
The best chance for their son, Dr. Hauptman told them, was to disconnect half of his brain.
The procedure is called a hemispherectomy and is among the most complex operations in pediatric neurosurgery. Phoenix Children’s is one of a small number of health systems in the world that performs it. Gunnar would become the youngest patient to undergo the procedure at Phoenix Children’s.
“I thought, disconnect his brain? I can’t imagine him living with only half a brain,” Brenna said of the moment they heard what the surgical option entailed. “I remember Dr. Hauptman saying, ‘Let me help you get out of this dark hole you are in. I know this sounds scary to you, but I know what comes on the other side of this surgery. Let me help you help Gunnar.’”
What the family did not know was that Dr. Hauptman had been on personal time off when Gunnar arrived at Phoenix Children’s. When Dr. Chapman called to brief him on the case, Dr. Hauptman came in to meet Gunnar and his family himself — making sure Brenna and Ethan felt the full weight of the team standing behind them.
“He helped guide us in our decision,” Brenna said. “He changed our lives and gave us hope. He didn’t pressure us. He reassured us. We knew Gunnar’s seizures weren’t good, but it wasn’t until we met with Dr. Hauptman that we realized how serious this was. These weren’t just seizures that could be controlled with medication. They were putting his life at risk.”
Dr. Hauptman connected the family with parent support groups too. They found other families who had faced the same diagnosis and the same decision.
“For Gunnar, waiting was simply not an option,” Dr. Hauptman said. “The seizure burden he was carrying was going to significantly affect his neurological development and possibly even threaten his life. Infants have a window for neuroplasticity — a capacity for the brain to reorganize and adapt — that is both amazing and the best it will ever be. We could not afford to let that window close.”
“We were terrified of the unknown,” Brenna said. “We also knew it was his best chance.”
They said yes to the surgery.
What Comes on the Other Side
The surgery lasted about six hours. The recovery was hard, but the seizures stopped.
“That surgery didn’t just stop his seizures — it saved his life,” Brenna said. “It gave Gunnar the opportunity for a future we once weren’t sure he would have. It gave our family hope when we needed it most.”
Before the operation, Gunnar rarely looked at his parents. He was not really smiling at them, responding to their voices or reaching the developmental milestones that mark those first months of life. The seizures had delayed everything.
“None of us were able to sleep. We were constantly wondering if a seizure was going to stop on its own or if we needed to take him back to the hospital. We lived in a constant state of fear. I was afraid to leave the house with him because I never knew when another seizure would happen,” Brenna said.
In the weeks after surgery, that changed.
“After surgery, it was like we’ met our baby for the first time,” Brenna said. “He knew us. He smiled at us. He engaged with us.”
“What we see in infants after successful epilepsy surgery is remarkable,” Dr. Hauptman said. “The healthy side of the brain can take over functions it was never originally mapped to handle. When you remove the source of the seizures early enough, development that has stalled can finally move forward — in ways that simply are not possible later in life. Phoenix Children’s has one of the highest rates of seizure freedom for this procedure, and cases like Gunnar’s show why early intervention matters.”
The Boy Behind the Brave Warrior
Gunnar’s name means “brave warrior.” His parents chose it before they knew how much he would need to live up to it.
He attends physical therapy twice a week to build gross motor skills and occupational therapy once a week to strengthen his left hand, which shows some weakness on the side of the body opposite his surgery. With encouragement, he is already learning to use his left side, and his therapists have become like a second family.
He is active and determined, rolling across the room to get where he wants to go and getting closer to sitting up on his own. One of the biggest milestones of all was when Gunnar went from being on six medications to none.
“Hopefully he can do all the things a typical kid can do,” Brenna said. “Neuroplasticity gives him the best chance.”
He is also, by all accounts, quite the personality.
Gunnar is smiley and loves people. He is opinionated and vocal about it, making sure everyone knows when he is happy, excited or has something to say. He kicks, plays, explores and is becoming more curious about the world around him every day. He says “Mama,” “Dada” and, perhaps most fittingly, “Done!” when he has had enough. He has firm feelings about food: beef is a yes, bananas are a no. He loves being sung to, especially “The Wheels on the Bus,” “The Itsy Bitsy Spider” and “Twinkle, Twinkle, Little Star.”
The care that made all of this possible was a team effort — neurosurgery, neurology, genetics, anesthesia, pediatric intensive care and therapy, all working together around one small patient in one of the most critical windows of his young life.
“Thank you for treating Gunnar as if he were your own son,” Brenna said of the Phoenix Children’s team. “He has a bright future because of you.”
For Families Still in the Dark
Brenna knows there are other parents right now sitting where she once sat — facing a diagnosis they do not understand and a decision that feels impossible to make. She has been there. She wants them to know they are not alone. “As parents, it is easy to question everything,” she said. “Contact other moms in your shoes. They can relate and offer support. Lean on your medical experts and trust them.”
She also wants others to know that “Sometimes the hardest decision can be the one that changes everything. I’m willing to talk with any family navigating a similar diagnosis or considering hemispherectomy surgery. Hearing from someone who has walked that road can make the journey feel a little less lonely.”
At Phoenix Children’s, even the most complex diagnoses are opportunities for treatment. Gunnar is not the only child whose life changed after epilepsy surgery at Phoenix Children’s. Aris spent years living with misdiagnosed epilepsy before finding answers at Phoenix Children’s. He has been seizure-free for more than a year after surgery. Stories like Gunnar’s, Aris’s and countless others show that outcomes once out of reach are possible — with the right team and the right timing.
If your child has been diagnosed with epilepsy or is experiencing uncontrolled seizures, the neurology and neurosurgery teams at Phoenix Children’s are here to help. Call (602) 933-KIDS (5437) or request a consultation.
