Nayelie Perez Navas – Ossifying Fibroma

Fourth Time’s the Charm — A Stunning Discovery

Nayelie Perez Navas didn’t have symptoms. Not really.

Like most 12-year-olds, Nayelie — from Arecibo, Puerto Rico — enjoyed doing arts and crafts, going to school, and playing with her siblings. And she was able to do those things without trouble.

“I didn’t feel any pain,” Nayelie said. “I didn’t really feel anything.”

The only thing that seemed a little different about their sweet, eldest daughter was a distinct bulging of her eye.

Nayelie’s mom and dad, Nairoby and Abisaid, took her to the doctor where they got a life-changing diagnosis. Nayelie had ossifying fibroma. This rare, benign tumor sat on the brain, roughly between her eyes.

“The tumor was pushing one of Nayelie’s eyes out and down,” Nairoby said. “It was also obstructing her nasal passages, which made it hard for her to breathe.”

They needed to get rid of the tumor.

Doctors in Puerto Rico performed Nayelie’s first surgery. By going through the nose, they were able to remove part of the tumor. But it wasn’t enough. The tumor regrew.

Nayelie had a second operation to remove more of the tumor. Sadly, a small piece of tumor regrew again.

After two years, her doctors in Puerto Rico told the family there wasn’t much more they could do. Instead, the doctors would search for a place that could provide a better, more permanent option for removing the tumor.

After looking at dozens of hospitals across the country, they found the center that could best help the Navas family. UPMC Children’s Hospital of Pittsburgh.

Nayelie’s doctors, along with International Services at UPMC Children’s Hospital, arranged the visit.

Not Giving Up

In January, the Navas clan made their first trip to Pittsburgh for Nayelie’s third surgery.

Over six hours, a team of experts operated on her tumor:

• Neurosurgeon Paul Gardner, MD
• Ear, nose, and throat surgeon Carl Snyderman, MD
• Eye surgeon Tonya Stefko, MD

They used the endoscopic endonasal approach (EEA) to access Nayelie's tumor. This minimally invasive technique allows doctors to operate by using the nose, and in Nayelie’s case, a small incision near the eyelid.

While EEA isn’t common at most centers, the experts at UPMC Children’s Hospital are skilled in this innovative procedure.

But the tumor wasn’t gone yet. Not really.

A CT scan showed a tiny piece of the tumor hidden by scar tissue from Nayelie’s past surgeries. Her surgeons wasted no time. The next day, she was back in the operating room.

Nayelie spent three weeks recovering while her family stayed in the Ronald McDonald House. Nayelie, who loves arts and crafts, made little paper origamis. And she learned how to make slime from YouTube videos.

Since the surgery, Nayelie and her family have made two more trips to UPMC Children’s.

During the most recent visit in August 2018, Nayelie saw Drs. Snyderman and Stefko and pediatric neurosurgeon Elizabeth Tyler-Kabara, MD, who gave them the good news. No new tumor growth!

The Navas family is relieved and thankful.

“We’ve had a great experience here,” Abisaid said. “The doctors are very, very good.”

Nairoby added, “We thank God for leading us to this excellent place. Now, the only surgery that remains is one to fix Nayelie’s eyelid that droops slightly. We’ll come back for that in the future.”

For now, Nayelie is thrilled being back in school, hanging out with her friends, and making crafts.

She has nothing to worry about except being a kid. Really.

Contact UPMC Children’s Hospital of Pittsburgh

If you live outside the U.S., contact our International Services team to seek a consult or refer a patient.