One-and-a half-year-old Bella was having seizures from birth. Her mom, Susan, shares, “I kept asking during check-ups with doctors if her weird eye blinking was normal. They said, ‘Yes, that it was normal newborn movement.’”
Still not convinced Bella’s movements were normal newborn behavior, Bella’s parents took her to the ER where an EEG confirmed she was having seizures. A MRI also confirmed brain malformations throughout her left hemisphere. “We spent the first nine months of her life watching her seize daily. No medication or other therapeutics were able to control Bella’s seizures,” said Susan.
The only option was surgery. On February 18, 2020, Bella had her last seizure. Neurosurgeon Arthur DiPatri, Jr., MD, and team at Lurie Children’s removed and disconnected her brain’s left hemisphere. Susan shared, “She has been seizure-free since her surgery. But due to the structure of her brain and also having a stroke at birth (unknown to us until her MRI), Bella can remain at risk for seizures. That is why epilepsy awareness is so important to our family.”
She continued, “Trust your gut. If something is off about your baby, get answers. Not all seizures look the same. Before Bella, I thought a seizure was someone convulsing and losing consciousness. Bella's seizures were subtle and not very noticeable.”
Today, Susan is happy to report that Bella is a happy toddler who loves being outside, listening to music and playing with her brother and sister. Most of all, she loves lots of snuggles and hugs!
“We are very grateful for everyone that agreed that an aggressive treatment and surgery was Bella's best option. It saved Bella's life,” said Susan. “We are forever indebted to Lurie Children’s and the team for giving Bella a second chance. She was reborn the day of her surgery. Before surgery, she wasn't really aware of her surroundings because of all the seizures she was having. After, we finally had our little girl join our family and see us and the world for the first time.”
Hemispherotomy surgery can now be done minimally invasively through a much smaller opening with the help of an endoscope (a thin surgical camera) through only a four centimeter incision resulting in less blood loss and in enhanced recovery. Sandi Lam,MD, MBA, Division Chief of Pediatric Neurosurgery at Lurie Children's, is one of a few neurosurgeons in the world who offers endoscopic hemispherotomy.
Dr. Sandi Lam and her team recently published their health services research in the journal Neurosurgery using data from children's hospitals across the country.
Epilepsy surgery in children with refractory epilepsy, who have poor seizure control with medications, results in better outcomes compared to antiepileptic medications alone. Better outcomes with epilepsy surgery include reduced antiepileptic medication use, higher rates of survival, fewer epilepsy-related emergency department visits, fewer hospitalizations, and fewer outpatient visits. The study compared the effectiveness of the addition of epilepsy surgery versus only medication treatment in this population, and, for the first time, examined the impact on healthcare utilization after two years and five years.
“There is urgency to achieve seizure freedom in children to prevent developmental arrest or regression, particularly in those younger than two years of age” said Dr. Lam. “Our study demonstrates critical benefits after epilepsy surgery, which underscores that all children with refractory epilepsy should be referred for surgical evaluation without delay.”
An estimated 470,000 children in the United States have epilepsy, and among them, up to 30 percent have seizures that are refractory to medical management. While children with poor seizure control are at increased risk for developmental delay and learning disabilities, it is estimated that fewer than 1/3 of children who could benefit from epilepsy surgery are receiving the surgical treatment they need. The first step is timely referral to a comprehensive pediatric epilepsy center for surgical evaluation.