Aiden's story - Sturge-Weber Syndrome

UCLA Health article

Sturge-Weber Syndrome

Aiden Waters is fortunate to be living in the 21st century when a surgical option exists for treating Sturge-Weber Syndrome. This rare congenital condition affects one in 50,000 Americans. In 4-year-old Aiden's case, a deep purple birthmark on his face and scalp was the first sign that he had this rare syndrome. The birth mark is associated with blood vessels within his brain that with seizures were slowly destroying cortex. Violent seizures threatened the destruction of the other hemisphere.

After anti-seizure medication began to lose its potency, a battery of tests were performed to see if Aiden might be a candidate for a hemispherectomy (the removal of the diseased or dying part of the brain). To qualify for this treatment, tests must show that the seizures are limited and completely isolated to the diseased portion of the brain.

Aiden's surgery was performed by Dr. Gary Mathern, neurosurgical director of the Pediatric Epilepsy Surgery Program at UCLA Mattel Children's Hospital.

By removing the part of the brain that had been destroyed, doctors aimed to stop the seizures and allow the other brain hemisphere to develop as normally as possible. The hope was to allow Aiden to reach developmental milestones such as talking, walking, chewing and playing with others. And, indeed, four days after returning home from the hospital, Aiden went back to school. Now seizure-free, Aiden will benefit from therapy, and over time, he is expected to improve both cognitively and physically.

UCLA is a pioneer in the field of pediatric epilepsy neurosurgery and has performed 175 hemispherectomies on patients with untreatable seizures. UCLA is one of handful of centers nationwide where this procedure is performed.