University of Iowa doctors reshape child's face and future

Team performs 'extremely major procedure' to repair hole in boy's skull

 

IOWA CITY — In a small gray suit coat and white sneakers, Moise Irakiza holds still.

On most weekday mornings like this, the 8-year-old Congolese boy would be with his second-grade class at Edmunds Elementary School in Des Moines. He’d be in art — his favorite “special.” Or outside at recess. Or eating chicken nuggets and broccoli and peaches with his friends at lunch.

But on this Wednesday in late January, Moise — who goes by “Moses” at school — looks University of Iowa physician Arnold Menezes square in the eye while the world-renowned neurosurgeon wraps a thin tape measure around the boy’s head.

“Look at me,” Menezes tells Moise. “Now show me your teeth. … Can you cough? Go. Cough.”

Moise forces two shallow coughs while his mother — Nyamamyana Natutsi — watches anxiously, waiting for signs of reassurance.

Menezes is generous with his praise of the boy’s progress.

“He looks good,” he tells her. “The X-rays look good mama.”

Five years ago, they did not.

 

Natutsi and her family, including 10 children — 3-year-old Moise being the youngest — had just arrived in Des Moines after fleeing the war in Congo, first relocating to Burundi before the United Nations resettled them in Iowa.

Moise had a facial deformity, which Natutsi noticed when he was 3 days old. But she didn’t know exactly what might be wrong until April 20, 2015, a social worker in Des Moines directed her to the Blank Children’s Hospital emergency room, where doctors performed a CT scan. Moise was referred to UI Hospitals and Clinics, where he was seen in pediatric neurosurgery on May 14, 2015, Menezes said.

His official diagnosis was “nasofrontal encephalocele with facial, nasal, and orbital deformities and large basal skull and orbit defects.”

In lay terms, Menezes told The Gazette, the boy was born with a hole in the front of his skull. His brain was growing through it.

“His brain had come through it and filled this whole space up,” Menezes said, pointing to an x-ray image taken of Moise’s skull five years ago. “His eyes and development were pushed aside.”

 
 

In that Moise went so long without being diagnosed, Menezes said, a defect of this type and magnitude is “very rarely encountered in the United States.” His UI team, though, with its elite reputation across the neurological community, performs at least six to eight times a year the type of procedure required for Moise.

“This is an extremely major procedure,” he said.

After ensuring he had no infections, Moise underwent his first surgery on Aug. 4, 2015. With a team of UI physicians — including Saul Wilson, Brian Dlouhy and Deborah Kacmarynski — Menezes opened the front half of Moise’ skull, removed the part of the brain that was growing through the gap, and patched up the hole.

To do that, Menezes said, he pulled a slice from the back of Moise’s skull and split it in half — using one portion for the hole and returning the second to the region from which he pulled it.

“It’s very complex,” he said. “It’s a 10-hour procedure.”

Two days later, on Aug. 6, 2015, Menezes and Kacmarynski embarked on Moise’s facial resection and reconstruction — after which the boy spent several weeks in the hospital and “did remarkably well,” Menezes said.

Despite his facial deformity and irregular brain growth, Moise never experienced cognitive abnormalities. And, following his procedures, his mother — who recently spoke with The Gazette through a translator — said her son was the same old Moise.

“Nothing really changed,” Natutsi said through Mike Ogoli, a UI nurse manager in psychiatry who also speaks in Swahili. “The only thing that changed was the face.”

 

None of Natutsi’s other children have similar abnormalities, and she told The Gazette she didn’t initially grasp what was wrong with her child or what it might mean for him long-term.

She did, however, have a deep faith, an appreciation of the promise of her new home, and trust in the medical care her son was getting here.

“Once they arrived in the United States, they had a belief in God that everything would be good and Moses was going to be taken care of,” Ogoli said for Natutsi.

Menezes was aware of the mother’s lack of understanding — compounded by a language barrier — and he’s been patient in explaining what he expects will be a long medical journey for her child.

“She thought I was going to be able to take a wand and go over him and everything was going to be fine,” he said. “So I told her, ‘You know, this is going to take several steps in trying to fix this.’”

Moise, Menezes said, likely will need more surgery — although not as major as his first procedures. And he’ll need to continue his UIHC checkups for years, up to 20 or more.

“We have to follow through to make sure everything is OK,” the doctor said. “Plus we’ve got to make sure about his brain development and school performance and function, as well as the eye and the face and the teeth.”

 
 

From Natutsi’s perspective, the idea of Menezes magic wand is not so far-fetched. After her son’s first operations — to plug the hole in his skull and reshape his face — Natutsi through Ogoli said she was “just so happy.”

“I just wanted to lift him, I wanted to lift the doctors,” she said. “I was just really excited.”

The treatment doesn’t come without stresses or challenges — like the need to make regular trips to Iowa City from Des Moines and the medical expenses, which Menezes said he can’t discuss without violating patient privacy.

But when asked for her thoughts about Menezes and what he’s done for her family, Natutsi said it’s been “so important” and then added a thought — which a choked-up Ogoli had to pause to translate, explaining, “I’ve been seeing him since he was little.”

“If there’s anything you can say about Dr. Menezes, he truly helped me,” Natutsi said. “And God will pay him back.”

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