Brain Surgery at 9: Sonali Shines

Sonali Patel is a thriving 10-year-old girl whose bright smile lights up a room when coaxed from a seemingly shy exterior. 

With math and art as her favorite subjects, she’s learning to play the violin and loves riding her new bike. She’s a typical girl in many respects. But in one way that’s invisible when you meet her, she’s had a serious medical journey to which few can relate.

Her long black hair covers a faint scar on her scalp, where last summer a pediatric neurosurgeon removed an arteriovenous malformation – AVM for short – on the left side of her brain. An AVM is essentially a tangle of blood vessels in the brain that connects arteries and veins, disrupting the normal process where arteries take oxygen-rich blood from the heart to the brain and veins carry the blood back to the lungs and heart to get infused again with oxygen.

AVMs are rare, occurring in less than 1% of the population. And they’re usually congenital, meaning it’s likely Sonali was born with it.

One May night last year, Sonali complained of stomach pain and after her mother, Nilam Patel, got her back to bed, Sonali became unresponsive and began shaking with a seizure. Sonali’s father, Divyank Patel, says he initially called 911, but then quickly decided to scoop up his daughter and drive her to the Children’s ER at Lehigh Valley Reilly Children’s Hospital, about seven minutes away.

There, doctors discovered the seizure was caused by the AVM, which had started to bleed. Sonali was stabilized and allowed to recover from the bleeding. A few months later, in early August, pediatric neurosurgeon David Hong, MD, removed the AVM in a lengthy operation. Hong’s affiliations include Lehigh Valley Reilly Children’s Hospital and Lehigh Valley Fleming Neuroscience Institute.

Sonali went home two days later. “She was doing pretty well and recovered very quickly at home,” Hong says.

Divyank Patel says Hong explained treatment options, but noted surgery was the option that would rid his daughter of the problem right away. Other treatment options left a chance for the AVM to recur. Divyank Patel said he assured his daughter everything would be alright. “I told her, ‘Your father stands behind you. Don’t worry about anything.’ ”

“She’s never been sick. That’s why I was so scared,” Nilam Patel says.

Hong used augmented (AR) and virtual reality (VR) tools as he planned Sonali’s surgery, consulting with neurosurgeon Walter Jean, MD, Chief of Neurosurgery for Lehigh Valley Fleming Neuroscience Institute.

Coupled with Sonali’s brain images, Hong created a 3D model of the problem area and came up with the best way to remove the AVM. That meant cutting less hair, a shorter incision and less pain.

It meant Hong was able to zero in on the blood vessels involved and do other important surgical planning. Without tools such as AR, Hong says he would have had a reduced level of guidance to the problem area and would have had to cut a larger opening in Sonali’s skull. The best guidance is important because the left side of the brain controls things including speech and memory.

Hong says Lehigh Valley Reilly Children’s Hospital’s location at the Lehigh Valley Hospital–Cedar Crest campus means tools like AR and VR can easily be used across pediatric and adult services.

“Using advanced technology in these cases demonstrates we’re able to tackle the newest things and do them well and with the support of the entire network,” Hong says.

Sonali remains on anti-seizure medication as a precaution and continues to follow up with Hong. “We usually follow them (pediatric neurosurgery patients) for quite some time,” Hong says. “The pediatric side has a longer doctor-patient relationship. We’ll need ongoing surveillance for many years.”

The Patels say they were comforted by the skill and compassion at Lehigh Valley Reilly Children’s Hospital. “He’s (Hong) a good guy and I trust him,” Divyank says.

When Sonali was first hospitalized after her seizure, she received a visit from two of her Kernsville Elementary School teachers.

Fourth-grade teacher Rachel Gohman said she and teacher Mary Kelly (English as a second language) brought pizza and a card signed by Sonali’s entire class. They also delivered school supplies, art activities and a book to help keep her occupied during her hospital stay. “She was very appreciative because she loves school and missed being with us,” Gohman says.

They described Sonali as having a quiet confidence and someone not afraid to face challenges. “She’s kind and helpful and always greets you with a smile,” Kelly says.

Sonali’s parents say her smile continues to shine today because of the great care she received from everyone at Lehigh Valley Reilly Children’s Hospital, including Hong. “I believe he (Hong) is a master. He’s a genius,” Divyank Patel says.