Postoperative outcomes and predictors of functional sequelae following hemispheric surgery in Rasmussen’s encephalitis: A retrospective cohort study from the global pediatric epilepsy surgery registry. Epileptic Disord. 2026. Published in Epileptic Disorders, using data from PESA’s Global Pediatric Epilepsy Surgery Registry
A note for families: This study looked at a group of 37 children. It shows patterns across the group of children in the study. It does not predict what will happen to any one child. Every child’s situation is different. If you’re making a decision about surgery, talk with your child’s care team about what these findings might mean for your family.
What the study found
- 85% of children had no more seizures after hemispheric surgery.
- 86% of caregivers said their child’s quality of life got better. Out of everything the study looked at, being seizure-free was the biggest reason caregivers felt life had improved.
- Vision changes were very common after surgery. Before surgery, 16% of children had vision problems. After surgery, that number rose to 84.4%. The most common problem was losing part of their field of vision (called homonymous hemianopia).
Why the real number is likely higher: Experts expect all children to have homonymous hemianopia after this type of surgery. That’s because the surgery works by disconnecting one half of the brain, and that disconnection also cuts the pathway that carries vision from one side. Homonymous hemianopia is a built-in, expected result of how the surgery works.
Even so, only 84.4% of caregivers in this study reported it. The study’s authors think this gap happens because the vision loss can be hard to notice, especially in young children. Kids often adjust automatically by turning their head or eyes, so parents may not realize anything has changed. This is an important reminder: if your child has had this surgery, they likely have homonymous hemianopia even if no one has pointed it out, and it’s worth asking your child’s care team about a vision exam.
- Movement and speech changes were different for each child. Kids who were older at the time of surgery were more likely to lose motor skills they already had, like walking or running. Kids who had surgery on the left side of the brain were more likely to have speech problems. This matches what earlier research has found, and it shows why doctors need to plan each surgery carefully for each child.
- Timing mattered to families. More than half of caregivers wished the surgery had happened sooner. On average, it took about 2 years and 8 months from when seizures started to when the child had surgery. The study’s authors say this shows a need for faster diagnosis and treatment.
- Most families felt it was worth it, but not all of them. 86% of caregivers said the benefits were worth it. Still, 12.5% said they had some regrets. No parent said they had “significant regrets”. This shows how big and personal this decision is for families, and why they need full, honest information to help them decide.
Why this research matters
Hemispheric surgery can change a child’s life for the better, but it cannot be undone. Families and doctors need real information not just about seizures, but about how surgery affects the whole child to make this decision together. This is one of the first studies to gather that information directly from caregivers.
With gratitude
This study would not exist without the parents who took the time to fill out our registry survey. They shared some of the hardest moments of their family’s journey. Thank you.
We are also deeply grateful to the research team from the University of Pittsburgh Medical Center who wrote this study: Krish Nair, Nicholas Benjamin, Emily Harford, Levi Shelton, Ariel Heller, Katherine Cobb-Pitstick, Luis Fernandez, Ross Carson, William Welch, Taylor J. Abel, and Ruba Al-Ramadhani. Their work turns caregivers’ experiences into evidence that can help families everywhere make this decision with more confidence.
Read the study
Nair K, Benjamin N, Harford E, Shelton L, Heller A, Cobb-Pitstick K, et al. Postoperative outcomes and predictors of functional sequelae following hemispheric surgery in Rasmussen’s encephalitis: A retrospective cohort study from the global pediatric epilepsy surgery registry. Epileptic Disord. 2026. https://doi.org/10.1002/epd2.70394
Join the registry
If your child has had epilepsy surgery, your family’s experience can help the next one facing this decision. Join the Global Pediatric Epilepsy Surgery Registry →