Meet Nissiela | Pituitary and Skull Base Surgery Center Patient Stories

Expert Skull Base Surgery and Care Help Nissiela Thrive

When Nissiela arrived at Cincinnati Children’s, she was just 4 months old and fighting for her life. A rare tumor was pressing on her airway and brainstem, making it difficult for her to breathe, eat and grow. For months, she had endured surgeries, feeding difficulties and long hospital stays close to her family’s home in Northeast Ohio. Her parents, Lydia and Nate, desperately wanted answers—and hope.

At Cincinnati Children’s, they found both.

A Rare and Complex Diagnosis

Lydia didn’t experience any troubles during her pregnancy and delivery with Nissiela, but shortly after birth, concerns began to emerge. Nissiela struggled to keep food down, cried constantly and wasn’t gaining weight. She also couldn’t hear in her left ear.

Then, when Nissiela was just a few weeks old, a feeding therapist noticed a small bump behind her left ear. An imaging test revealed a tumor at the base of her skull.

Initially, doctors believed the mass was a germ cell tumor—a growth that develops from reproductive cells—and treated Nissiela with chemotherapy. But the tumor kept growing, and further testing revealed a rare diagnosis: giant cell tumor of the skull base with HMGA_NCOR2 mutation, a benign but fast-growing mass.

Meanwhile, Nissiela’s condition worsened. She developed respiratory failure, vocal cord paralysis and a severe feeding intolerance. She had multiple surgeries to remove portions of the tumor, but her wounds didn’t heal well, and her doctors felt she was still too small for a major surgery.

By the time she transferred to Cincinnati Children’s, Nissiela required a breathing tube to keep her airway open.

“We were frustrated and scared,” Lydia said. “We just wanted someone to figure out what was really going on and help her get better.”

A Team Built for Rare Skull Base Conditions

Because Nissiela’s case was complex, her care required coordinated expertise from multiple specialties—something Cincinnati Children’s skull base surgery program was designed to provide.

In 2025, the program was named a Multidisciplinary Team of Distinction by the North American Skull Base Society (NASBS). The NASBS is a neurological organization working to improve outcomes for patients with skull base conditions. The distinction recognizes medical centers with multidisciplinary teams dedicated to diagnosing, treating and managing skull base diseases.

Cincinnati Children’s skull base team includes pediatric neurosurgeons, otolaryngologists (ENT specialists), neuro-oncologists, plastic surgeons and other subspecialists who collaborate closely on each patient’s care.

“We’re all pediatric-trained subspecialists who have this expertise, and we’ve worked together for quite some time,” said program director and pediatric neurosurgeon Smruti Patel, MD. “We’ve built a great level of trust and respect for one another. We collaborate on the best approach for each patient. On complex cases, we think outside the box, discussing ideas and relying on each other’s expertise.”

That collaboration proved especially important for Nissiela because her tumor was located in one of the most delicate parts of the body.

“The base of the skull is where many critical nerves and blood vessels exit the brain,” Dr. Patel explained. “These are complex surgeries that require multiple specialists thinking carefully about how to remove the tumor while protecting a child’s long-term function and development.”

Rather than rushing into surgery, Nissiela’s team focused first on improving her nutrition and helping her gain weight while carefully monitoring the tumor with frequent imaging.

“We wanted to do this surgery once and remove as much of the tumor as safely possible,” Dr. Patel said. “The goal was to relieve the pressure on her airway and brain so she could develop as normally as possible.”

A Turning Point

A month after her transfer to Cincinnati Children’s, Nissiela was strong enough for surgery.

Dr. Patel partnered with pediatric otolaryngologist Daniel Choo, MD, to perform the procedure. The team also used advanced neuro-monitoring technology to map and protect the nerves responsible for facial movement and hearing.

“Our goal was to remove as much of the tumor as possible without causing any damage to surrounding areas,” Dr. Patel said. “And we were successful. We removed nearly all of it.”

Unlike after her previous procedures, Nissiela recovered quickly. Also, over time, the residual tumor that was left behind continued to shrink.

A few weeks later, Nissiela had another procedure to place a feeding tube through her stomach, which helped her take in nutrition.

“That’s when she really started looking and acting better,” Lydia said. “That’s when she started smiling.”

Growing and Thriving

Since returning home from the hospital, Nissiela has grown into a typical toddler. She still receives feeding and occupational therapy, has hearing loss in her left ear and remains largely nonverbal, but, physically, Lydia says, she’s doing remarkably well.

“Her most recent imaging test showed no tumor progression,” Lydia said. “She’s meeting all her milestones, including starting to walk at 14 months. She loves movies, especially ‘Moana.’ She sings along and communicates in her own way.”

Most importantly, Nissiela is finally able to experience life outside the hospital.

“As a baby just having had surgery, I worried she might have damage,” Lydia said. “But her face is perfectly fine. She can smile and make facial expressions.”

Lydia credits Nissiela’s care team at Cincinnati Children’s with not only caring for her daughter but also her entire family.

“I can’t say enough about the whole team in Cincinnati and the support they provided,” Lydia said. “Dr. Patel was very thorough. She told us everything she was going to do and what to expect. She was also very encouraging.”

For Dr. Patel, caring for families like Nissiela’s is one of the most meaningful parts of her work.

“It was really scary for them,” she said. “I could see it in their eyes every day. I feel very privileged to work alongside so many great people where we can help families navigate something this difficult together.”

(Published June 2026)