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.”

 

Sign up for our Newsletter

Get health tips from our pediatric experts, news about ground-breaking research, and feel-good moments delivered right to your inbox.

Subscribe Now
Categories
Patient Stories


Related Posts

‘Welcome to Your New Home:’ A Look at the Process of Transporting Hearts

Alexa Tannous, one of the physician assistants (PA) in the Heart Center’s cardiovascular and thoracic surgery,  shares these details and more on the integral – and emotional – process of safely transporting these precious organs.

Read More

Kelin ‘In Good Hands’ with ENT Expert in Robotic Surgery

Kelin had a large vascular lesion in her throat that was growing and needed to be surgically removed and came to Lurie Children's state-of-the-art pediatric Robotic Surgery Program.

Read More

Giving Back When the Journey Is Not Over: Hope’s Story

One little girl's resilience fuels a movement: Hope's journey with spina bifida and the fundraising tournament that followed. 

Read More