Lily’s life transformed

Lily and her mom, Marcia, visit with Children’s Memorial neurosurgeon Tord Alden, MD, and Epilepsy Center director Douglas Nordli, MD.

Four-year-old Lily Delgado is a whirlwind of activity on a Saturday morning in her suburban Chicago home. The happy little girl, better known as Lily, shifts between chasing her younger brother, Carlos, playing with her interactive “Dora the Explorer” game and hugging and cuddling with her parents, Marcia and José. While this may seem like routine behavior for a preschooler, in the eyes of her parents it is a dream come true.

When she was 4 months old, Lily was diagnosed with a form of epilepsy called infantile spasms. A specialist at an area hospital prescribed a variety of medications, which proved unsuccessful in controlling her seizures. By the time she was 18 months old, Lily was suffering two-minute seizures, twice a day. “We felt so helpless,” says Marcia. “Those two minutes felt like forever.”

Eventually the toddler was experiencing up to 15 “absence seizures” each day, which her mother describes as staring spells, as her quality of life continued to suffer. Desperate for hope, the Delgados sought help at Children’s Memorial Epilepsy Center, one of the busiest and most comprehensive pediatric epilepsy centers in the Midwest.

Under the leadership of Epilepsy Center Director Douglas R. Nordli Jr., MD, team members specialize in caring for children and young adults with the most difficult to treat forms of epilepsy. The staff’s comprehensive approach to patient care includes diagnostic testing, evaluation services and family support programs. Each year they evaluate nearly 1,000 children in the hospital’s Nordstrom Epilepsy Observation Unit and conduct more than 1,700 outpatient visits.

From their first appointment with Nordli, the Delgados felt a sense of hope as he patiently answered their questions and, equally importantly, says Marcia, listened to their concerns.

“As caregivers we must do what we can to bolster these kids and their parents and keep them feeling hopeful,” says Nordli. “We try to provide a ray of hope for families because the good news is that every week at least one of our patients goes into remission.”

Lily underwent a series of tests and brain scans, including an electroencephalogram (EEG), during which electrodes were placed on various parts of her scalp to record the electrical activity in her brain. After reviewing the data, Nordli was able to determine the precise location in her brain where the seizures originated.

After consulting with colleagues in the Division of Neurosurgery, Nordli recommended surgery as the best course of treatment to stop Lily’s seizures. While the majority of children with epilepsy are helped by medications, surgery is often the best choice for those like Lily who do not respond to them.

In December 2008, Lily underwent surgery, led by Children’s Memorial neurosurgeon Tord Alden, MD, co-director of epilepsy surgery with Arthur J. DiPatri Jr., MD. Alden carefully removed a small portion of Lily’s brain, the part believed to be causing the seizures. Since the procedure, Lily has not experienced a single seizure. “It was the best Christmas present we could have asked for,” says Marcia.

Nordli, an associate professor of neurology and pediatrics at Northwestern University’s Feinberg School of Medicine, says that neurosurgery for children with treatment-resistant seizures, like Lily, can be life-changing. “Just imagine a child having intractable seizures several times a day and then after a seven-hour operation the seizures are gone,” he says. “It’s pretty amazing.”

The word “amazing” also sums up Lily’s progress since her surgery. Her parents report that she is making up for the playing time she lost when she was suffering frequent seizures.

“It used to be that she didn’t want to play with other kids because she didn’t want anyone around her in case she had a seizure,” says Marcia. “Now she loves to play and is making up for all the time she lost. It’s just wonderful to see how well she’s doing!”

Philanthropy has played a critical role in the epilepsy center’s growth, including the recruitment of Nordli, the Lorna S. and James P. Langdon Chair of Pediatric Epilepsy. expansion of staff and programs, training of tomorrow’s specialists and acquisition of the latest technology. Seed funding for the center’s research program was also made possible through donor support.