Almost exactly three years after Bella was born, another family was searching online for answers about hemimegalencephaly (HME) when they found Bella’s story. When Trace was born in 2021, he had HME and seizures that evolved into infantile spasms before his second month of life, a type of seizure that causes serious neurodevelopmental delays. Trace’s neurologist suggested a hemispherectomy at three months of age, but Trace’s parents wanted a better option.
“It was frightening to think about my three month old having half of his brain removed, and I understood that waiting could compromise his development long term,” Michael, Trace’s father, said. “I went online to find an option that would give Trace the best chance possible, and that is when I found Bella’s story.”
Michael and his wife, Emily, contacted the team at Children’s National Hospital in November 2021. After deliberating, Trace’s parents decided to travel from their home in Ohio to Children’s National. Trace had his first of three procedures in December, and once the procedures were complete, was discharged in January 2022. Monica Pearl, M.D., director of the Neurointerventional Radiology Program, remembered a startling moment when she saw Trace’s EEG for the first time after embolization.
“I was in the NICU clinical room and Dr. Youssef Kousa and the epilepsy team showed me the dramatic difference in Trace’s EEG before and after embolization. I was tearful and speechless when I saw on the EEG that the seizures had stopped after embolization,” she said. “These patients are seizure-free because of these procedures. That is my motivation.” Now home, Trace has shown significant progress.
“He is alert, babbling, cooing and smiling when before he was mostly sleeping because of the seizures and medications,” Emily said. “Our hope is he will be able to talk and communicate in the future; we would love to see him walk someday. Because of Dr. Pearl and Taeun Chang, M.D., and the team at Children’s National, I think that will be possible.”
Dr. Chang said she hopes stories like Bella’s and Trace’s will spread so other families have an alternative to the current standard of waiting.
“It would be heartbreaking to know there is a child out there with HME who missed this opportunity because of a lack of knowing about this option,” Dr. Chang said. “Our patients are showing amazing progress and are walking, talking and living seizure-free lives. We want families and doctors to learn about this innovation and have hope.”
Dr. Chang passed away in June 2022.
Youssef A. Kousa
Director, Zika Genetics Consortium
Director, Neurointerventional Radiology Program