Jonah’s Story – Raising Awareness for Infantile Spasms

Jed and Erica’s son Jonah sustained a serious brain injury at birth. When he was 3-months old, Jonah’s EEG, a test of electrical activity in the brain, showed abnormalities that put him at risk for seizures. “Our doctor explained that normal protocol is for a child to receive another EEG at 9- or 12-months old and simply watch for seizures in the meantime,” Jed remembers. “But he also told us about a study at Lurie Children’s designed to see whether more frequent EEGs could detect problems earlier and lead to better outcomes. We decided to enroll Jonah.”

Jonah’s 6-month EEG soon showed that he was at high risk for developing a devastating form of childhood epilepsy known as Infantile Spasms (IS) or West Syndrome. IS is an extremely rare disease that causes serious brain damage in babies. Its exact causes are not well understood. But early detection is critical: the longer spasms go uncontrolled, the harder they are to stop and the more irreversible brain damage they cause.

For the next few weeks, Jonah’s doctors monitored him closely. He was eventually diagnosed with IS on the basis of an “electrical” seizure on his EEG and was quickly given an aggressive dose of frontline medication. Since then, Jonah’s EEGs have shown remarkable improvement. There is still a risk that the seizures will return, so his parents and physicians continue to monitor him closely for relapse. Nevertheless, Erica says, “Jonah amazes us every day. Jonah’s middle name is ‘Chaim,’” she adds, “which means ‘life’ in Hebrew. True to form, and despite so many obstacles, he has thrived. He’s walking (almost running!), loves daycare, and has endless curiosity. Most importantly, he’s a happy kid.”

Jonah’s parents are enormously grateful for the care Jonah has received at Lurie Children’s. Their experience, they say, has convinced them “that early monitoring and treatment should be the standard of care for all at-risk children,” even as “more research is needed so that babies like Jonah get the absolute best chance they can at beating IS.”