Colorado family finds the best care for baby with seizures at Lurie Children’s
Patrick was three months old when his parents, Erin and Brenden, discovered that the odd arm and leg movements he was having a few times a day were seizures. They were called infantile spasms, a serious type of epilepsy for infants.
Erin recalls “the nightmare” of hearing the diagnosis at a children’s hospital near their Colorado home. The infantile spasms were caused by a stroke Patrick had before he was born, which led to damage to one entire side of this brain. Perinatal strokes can be easily missed by doctors and parents in the initial newborn period.
The combination of medications and ongoing seizures trapped Patrick "in a daze,” Erin said. And worse, the medications weren’t stopping his seizures. Meanwhile, Patrick was not meeting milestones on time to roll, sit or crawl. It was also apparent that he was not using his left hand or leg well. The family understood brain surgery was the best path forward to give Patrick the best and healthiest future possible.
Erin and Brendan sought more information, doing extensive research and talking with pediatric neurosurgeons at two children’s hospitals. The couple did not feel they had the answer for their family until they got a third opinion: they flew to Chicago to meet with Dr. Sandi Lam, the division head of neurosurgery at Lurie Children’s, and an internationally recognized expert in pediatric epilepsy surgery.
After a thorough discussion with Dr. Lam about the type of procedure recommended for Patrick, called a minimally invasive hemispherectomy, the parents “full-heartedly trusted Patrick’s life in Dr. Lam’s hands,” Erin said.
Patrick was 11 months old when he underwent the procedure in March 2023, during which Dr. Lam disconnected the entire right side of his brain where the seizures originated because of his previous stroke. Because the right side of his brain had damage and dysfunction from the stroke, and from ongoing seizure activity, Patrick's left side of the brain would take over almost all the function of both sides. The procedure was likely to stop his seizures and prevent further damage to the "good" left side of his brain.
After a successful procedure with Dr. Lam, Patrick and family were able to fly back home within two weeks.
Today, the family reports that Patrick, at two-and-a-half, is seizure-free and making huge gains in his development. He is a “walking maniac,” his mom said, with the help of a gait trainer, and he became a big brother to Weston in February. “He has taken on the job like a champ,” Erin said.
He visits Lurie Children’s once a year to see Dr. Lam and to get a brain scan (MRI). In May, Patrick got the all clear to stop getting EEGs, the test used to monitor seizures. Because of the residual weaknesses on one side of his body, he maintains regular appointments with physical, occupational and speech therapies.
“Patrick is a perfect example of what a positive impact epilepsy surgery can have,” said Erin, who in October ran the Chicago Marathon in honor of her son and family, raising funds for Lurie Children’s Foundation.
“We are forever grateful to the team at Lurie Children’s who gave Patrick the gift of seizure freedom!”
Dr. Sandi Lam and the Marvel family’s story, including footage from the day of Patrick’s surgery, are featured prominently in a documentary about children including Patrick who have drug-resistant epilepsy. The film is available for rent or purchase on Amazon.
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