h1 arrowSturge-Weber Syndrome Center: Theo Shamberger’s Story

Just call Theo Shamberger Mr. Mellow. Always an easy baby who’s grown into a laid-back preschooler, Theo’s life has, in reality, been far from mellow.

When he was born, his doctor thought his face had been bruised during delivery because of the port-wine birthmark that stretches from left side of his scalp to his neck, covering his left eye and ear. But, worried that it might be more, doctors told his parents that he might have Sturge-Weber syndrome, a blood vessel malformation in the brain, skin, and eye. At only four-days old, he slept through an MRI that showed the telltale signs of the syndrome.

The diagnosis was overwhelming at first, but Theo’s pediatrician referred him to Dr. Anne Comi, director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute. With the support the committed team of medical professionals at Kennedy Krieger, Theo’s parents, Brandi and Peter were eased into the understanding that Theo had a neurological disorder.

“We feel so lucky to have met doctors who are so knowledgeable. The team at Kennedy Krieger gave us information and helped connect us with other families who were dealing with Sturge-Weber.”

Theo had his first seizure on his two-month birthday, just a week after his first appointment at Kennedy Krieger. Armed with information from Dr. Comi, Brandi knew what was happening right away, but it wasn’t enough.

“Seizures in very young infants with Sturge-Weber syndrome are frequently very difficult to control at first and can be associated with a stroke-like episode,” says Dr. Comi. “This is what happened with Theo.”

As a result of his disorder and the seizures, Theo has a visual field cut—he can’t see to the right in either eye—and his left eye has high pressure, which is checked every few months. One seizure caused paralysis on his right side, which has been improved considerably with physical and occupational therapy at the Institute.

Theo also shows a developmental delay, which manifests primarily through language. Signing helps him communicate with his younger brothers and parents. And Theo’s birthmark has even been lightened with laser treatments—and it’s now the furthest thing from his mother, Brandi’s mind. She laughs when she thinks of her initial concerns—that Theo would be teased about his birthmark at school.

“Theo has been through some difficult challenges,” Brandi says. But with support from Dr. Comi and Kennedy Krieger, Theo and his family have faced each one of them with their characteristic calm and confidence.

“The most important thing we’ve learned is to take one day at a time,” she says.

— by Laura Laing