Case Study: Maddie Lens

Chris and Heather Lens remember the day their daughter, Maddie, had her first infantile spasm. The first-time parents were feeding their 5-month-old daughter when Maddie jerked her head and threw her arms in the air.

“At first they weren’t overly concerned, but as the day went on, the spasms, later identified as seizures, grew in frequency and the couple took Maddie to doctors in nearby Tulsa, Okla. Within 36 hours of her first seizure, Maddie was diagnosed with tuberous sclerosis complex, a genetic disorder that causes tumors to grow in the body, primarily on the brain, eyes, heart, skin and kidneys.

The diagnosis, Heather and Chris said, was devastating.

“When you have a child, you’re excited about their future – is she going to be a cheerleader, what kind of car is she going to drive,” Heather said. “When we got that diagnosis, it almost felt like those things were being ripped away from us. We had no clue what her future was going to look like.”

After her diagnosis, Maddie underwent several drug therapies, which were unsuccessful at controlling or stopping her seizers. That’s when Chris and Heather began to discuss surgical options for their daughter. The Westville, Okla., residents were eventually referred to the doctors at The Tuberous Sclerosis Center of Excellence at Le Bonheur Children’s Hospital under the care of Pediatric Neurologist James Wheless, MD, codirector of Le Bonheur’s Neuroscience Institute and Tuberous Sclerosis Center of Excellence.

“She worked through several drug therapies and was still having frequent seizures so when she got to us we knew further drug therapy was probably unlikely to be successful based on the number of medicines she went through,” Wheless said. “We quickly realized that she was a good surgical candidate.”

After a consultation with Wheless in late 2015, the Lens family came back to Le Bonheur in November to remove a small section of Maddie’s brain, which was responsible for the seizures.

Chris and Heather called the surgery a success and took their daughter home in late November 2015. Both said Maddie’s care at Le Bonheur has helped their daughter to a better quality of life, and it’s been more than five months since her last seizure.

“She’s back to being a normal kid she‘s not having any more seizures and she hasn’t had any since the day of surgery,” Wheless said. “If you saw her playing on the playground or in your neighborhood, you’d never know.”

In addition to being seizure free, the 3-year-old’s communication skills also have greatly improved since surgery, her parents said.

“To be able to wake up in the morning and act like nothing is wrong, it’s surreal because it took weeks to realize that this is our normal life,” Chris said. “There are times now that I forget, until I see that scar, she had brain surgery, and she’s just a normal little girl right now.”