Broc’s Story: High-intensity Focused Ultrasound to Treat Seizures

Broc was 7 years old when he had his first tonic-clonic seizure (also known as a grand mal). He lost consciousness and had violent muscle contractions. It was extremely frightening for his parents, Heather and Dave, to see.

After a series of tests, Broc was diagnosed with a hypothalamic hamartoma. This is a tumor-like formation on the hypothalamus, the area at the base of the brain that controls the production and release of hormones by the pituitary gland. Hypothalamic hamartomas can cause seizures that result in cognitive impairment. 

It is a congenital condition, meaning it is there from the time of birth. In learning more about the condition, Heather and Dave came to realize Broc had actually been having seizures all his life. But they were gelastic seizures, which involve sudden outbursts of laughter, so the parents had not picked up on them.

For many patients with hypothalamic hamartoma, seizures can be challenging to manage. That was the case for Broc. Anti-seizure medications didn't work to control his seizures. So, at age 8, he underwent brain surgery to remove most of the hamartoma from the hypothalamus at a hospital in New York.

The surgery caused some decline in Broc’s vision and short-term memory loss, but it was successful in stopping his seizures. It also helped ease some behavior issues, like aggression.

At first, Broc’s parents felt the improvements in his quality of life outweighed the losses in function. Then, a few years after the procedure, the seizures started back up again. It got to the point that Broc was having about 50 gelastic seizures a day.

Broc went in for an evaluation and consultation at CHOP’s Neuroscience Center. The team was committed to helping Broc in a way that didn’t cause the loss of any more function. For Broc’s anatomy, with a very small hamartoma located next to structures critical for his learning and memory function, standard surgical treatments were deemed too risky. The epilepsy team recommended a non-invasive treatment alternative called high-intensity focused ultrasound (HIFU). This non-invasive technology focuses beams of ultrasound energy precisely and accurately on targets deep in the brain without damaging surrounding tissue. HIFU is typically used in adults with movement disorders.

In March 2023, at age 18, Broc underwent the HIFU procedure. Benjamin Kennedy, MD, an attending neurosurgeon and the Director of Epilepsy and Functional Neurosurgery in CHOP’s Division of Neurosurgery, collaborated with Casey Halpern, MD, a neurosurgeon at Pennsylvania Hospital, to perform the procedure. It was the first time HIFU was used on a pediatric patient outside of a clinical trial.

“Living with medication-resistant seizures has a real impact on quality of life,” says Dr. Kennedy. “HIFU is a really valuable treatment option without the risks that come with more invasive procedures.”

Since receiving HIFU, Broc has seen significant improvement in his quality of life. He no longer has debilitating seizures and he’s had cognitive improvements as well. A few months after the procedure, he graduated from high school.

"We're thrilled with the result,” says his mom. “We couldn’t have had a better outcome."