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PSU Honors alum featured in "Mending Matia: Faith, hope and medicine deliver great rewards for one small child"
Author: Katy Muldoon, The Oregonian
Posted: October 21, 2013

Read the original story here in The Oregonian. 

In the waiting room, a mother paced and prayed.

In the operating room, surgeons worked like a tag team. One opened the lower part of the patient's face, where the jaw should have been. The other two sliced into his right leg, removing the smaller of the two calf bones. From his torso, they took one rib and some cartilage.

They sawed the bones apart, attaching fibula pieces to a titanium frame, building a new lower jaw, and using rib and cartilage for the jaw uprights. They set the structure in place, screwing it to bone remnants from the patient's original jaw. Peering through microscopes they connected veins and arteries to feed it. Finally, they used skin and other tissue to craft a new chin and with it, a new life for their tiny patient.

His name is Matia Simion. He's 4. His story stretches from Romania to Portland and it could have ended before he turned 1.

The kindness of strangers saved him.

***

Perusing his email in February 2010, Adrian Petrisor clicked on a message from a Romanian pastor asking for money or medical advice -- the kind of thing that could have been a scam.

Instead of deleting it, the Beaverton contractor kept reading.

Enclosed with the pastor's note was a letter from a mother explaining her infant son's predicament: At about 6 weeks, the baby developed a small blue lesion on his gum. Romanian doctors figured it was a gingival cyst of the newborn, fairly common and typically benign. They told Marilena Simion not to worry.

The doctors were wrong.

The lesion grew so rapidly that by the time Simion's baby, Matia -- pronounced mah-TEE-ah -- was 3 months old, it obstructed his mouth, making it hard to breathe. He couldn't swallow and had to be tube fed.

In Bucharest, a biopsy found that Matia's growth was a melanotic neuroectodermal tumor of infancy. These, too, usually are benign.

Matia's was a rare malignant version.

Unable to help, Matia's doctors told Marilena and her husband, Florin, that if they didn't quickly find a specialist, perhaps someone in Western Europe or the United States, their baby would die.

In Beaverton, Petrisor finished reading Marilena's story and clicked through pictures of the bloody tumor bulging out past Matia's lips. With three boys of his own, the images made Adrian's heart ache.

He hit the forward button, typed in his brother's email address and pushed send. Adrian didn't know whether his brother could help and he didn't expect a swift reply. "You know how doctors are," he says. "They don't respond right away, even if it is your brother."

But Daniel Petrisor, 37, did.

He didn't have any pull. He was a trainee in the midst of a fellowship in oral and maxillofacial surgery. The publicly funded institution where he worked, Louisiana State University Health Sciences Center, wasn't financially flush and the deep recession kept checkbooks closed tight. Chances were slim, he figured, that the administration would allow the hospital to take a foreign charity case.

Still, Daniel shared the child's story and photos with Dr. G.E. Ghali, professor and chairman of the university's department of oral and maxillofacial surgery.

Turns out the department head either had pull or superior powers of persuasion. Hospital administrators agreed to a surgery that wouldn't cost Matia's family a cent.

Somehow, the Simions, who live in a small Northwest Romanian village and support their four children on Florin's income as a machinist and welder, had to quickly get Matia to the hospital in Shreveport, La. His tumor was growing so fast that a delay could prove fatal.

They didn't know how they'd swing the trip, but they knew one thing:

They had reason to hope.

***

Hope drove the Petrisor family, too -- at least as far back as 1979, when Adrian's and Daniel's father, Stelian Petrisor, a city hall laborer, escaped Communist Romania.

 

He asked authorities for permission to take his family to Western Europe but was denied. Finally, officials granted him the chance to cross into Yugoslavia to watch a soccer match.

Stelian didn't return. He hitchhiked to Western Europe and spent six months in a refugee camp in Italy before the United States granted him political asylum.

Romanian officials told his wife, Maria, that her husband was a traitor and she should divorce him.

She refused.

Authorities confiscated half the Petrisor's house, where Maria cared for Adrian, Daniel, their sister Corina and the children's grandmothers.

"It was not easy, to say the least," recalls Adrian, 48.

In the States, Stelian worked jobs that paid $1 or $2 an hour, Adrian says. He spoke no English. Yet, by the time his family got permission to join him three years later -- on condition they hand over the other half of their house to Romanian authorities -- he'd saved $30,000, enough for the Petrisors to make a fresh start.

When they arrived in Chicago, Adrian was 17, Corina, 14, and Daniel, 6. None spoke English.

Adrian headed to school at Salem's Corban University and his family followed, settling in Beaverton in the early 1990s. Corina became a registered nurse. Before graduating fromBeaverton High School in 1994, Daniel immersed in the school's health-career program and volunteered at Providence St. Vincent Medical Center.

Through his undergraduate honors program at Portland State University, he interned at the National Institutes of Health, where an oral and maxillofacial surgeon invited him into the operating room. The surgeon's passion for the field -- treating diseases, injuries and defects of the head, neck, face, jaws and mouth -- rubbed off. Daniel headed down the long path toward that specialty, studying oncology as well as head and neck reconstruction, precisely the skills he'd need to help Matia.

***

Daniel's brother helped the Simions navigate the bureaucracy of international travel.

From Beaverton, Adrian filled out visa paperwork for Matia and his mother. He promised the hospital that as their sponsors, he and his wife, Monika, would ensure the Simions had support in Shreveport. He reserved a flight, paid for airline tickets and made sure, he says, that Marilena carried a doctor's note declaring Matia healthy enough to fly.

Everything was set.

At the Bucharest airport, an airline official told Marilena the doctor's note was sufficient for her son to fly to London but they'd need further approval to allow him aboard a U.S.-bound flight. They might face long delays.

In Oregon, Adrian dialed the airline, explaining the urgency and implying, he says, that if Matia wasn't allowed to travel as planned and his condition deteriorated, the airline might be liable.

Then, he says, "my wife and I literally kneeled down and prayed."

When Marilena and Matia landed in London, an airline representative escorted them to the gate for their Dallas flight. They boarded without trouble. They were upgraded to first class.

By then, Matia's story circulated on Romanian blogs and offers of assistance rolled in.

Members of a Dallas church arranged for a private plane, which flew Matia and his mother from Texas to Shreveport. A Romanian pediatrician who'd just moved to town pushed aside unpacked boxes in his home so they had a place to sleep. And they met the first of a long procession of U.S. medical professionals -- one stretching from Louisiana to Oregon -- eager to try to help Matia.

"Our family, we didn't do very much," says Adrian, self-effacing and with only a hint of Romanian accent remaining after three decades in the States. "I believe God ... wanted the good for Matia. Everybody showed the love."

***

Matia was 6 months old. The tumor filled his mouth and drastically distorted his lower jaw.

Daniel and his LSU colleagues removed the tumor and about 90 percent of the jaw to ensure cancer-free margins. They found blue-hued lymph nodes in his neck, though, which tested positive for melanotic tumor.

Matia would need chemotherapy.

The surgeons installed a titanium plate, a makeshift jaw. It wasn't a permanent fix but it would suffice as he started treatment.

Marilena and Matia returned to Romania, where chemotherapy shut down tumor growth. In 2011, though, the metal plate in Matia's jaw pushed through the skin and became infected.

Daniel Petrisor arranged for him to return to Shreveport, this time with his father and again at no cost to the family. The surgeon installed a smaller titanium plate, hoping Matia's body would accept it.

But back in Romania, the plate pushed through the child's thin skin again. Infection followed. A surgeon in Hungary removed it and sewed up Matia's chin, deeply sunken where the jaw had been.

The boy managed. He could eat, though only soft food -- not the crackers and apples a healthy toddler might enjoy; without a lower jaw, he had no lower teeth. The missing bone structure meant he couldn't bring his lips together. And he had something like sleep apnea, snoring so much it was clear air wasn't moving freely to and from his lungs.

Toward the end of 2011 or perhaps early in 2012, as Daniel Petrisor recalls, Marilena reached out again. She wondered, was there anything more he could do?

The surgeon had moved home to Oregon, joining a Southwest Portland private practice. He does surgery at Providence St. Vincent and at OHSU Hospital.

He knew of another solution -- a far more complex surgery typically used with adults but only rarely tried on children. It involved building Matia a new jaw with bones and cartilage transplanted from other parts of his body and supplied with blood from his own arteries and veins. If it worked and his body didn't reject it, the new jaw might even grow as the child did.

Petrisor called hospital administrators all around the Portland area, asking if any could make room in their operating rooms, pediatric units and budgets to help Matia. The boy needed not only surgery but also many thousands of dollars worth of scans, intensive care, therapy, medicine and more.

Only one hospital said yes.

Petrisor and colleagues could perform the surgery at Providence St. Vincent's and the hospital staff would care for Matia. There was a hitch, though. The hospital's new pediatric intensive-care unit wouldn't open until April 2013.

Could Matia wait?

***

Two months ago, on Aug. 12, Petrisor gathered many members of the surgical team and post-operative crew in a Providence St. Vincent conference room. The surgery was about a week away and he wanted them to be ready.

As they discussed anesthesia, breathing and feeding tubes, pain medication and more, few took their eyes off the 3-year-old sitting next to his mother at a table in the middle of the room.

Without a jaw to hold it back, Matia's tongue drooped between his lips. His lower face structure was concave. Yet, the little brown-haired guy with long eyelashes, a shy smile and toy stethoscope around his neck charmed them.

Petrisor interpreted for Marilena, 38, who speaks little English:

"She says she's deeply impressed by everyone's generosity and willingness to help Matia. She says they've been through a lot. She knows this won't be easy, either. ... In Bucharest, they saw many hospitalized kids. Many of them are dead now. She says she's grateful Matia is still here."

The room fell quiet.

***

Matia turned 4 on Aug. 20. That day, Marilena says through an interpreter, she prayed and "gave him to God."

About 6 a.m. the next day, they arrived at Providence St. Vincent.

Matia didn't seem scared. Before the anesthesia took hold, he cracked up the operating room crew, pretending to shoot them with his toy gun.

Daniel Petrisor and surgeons Dr. Brett Ueeck and Mark Wax, a leading expert in the microvascular surgery known as free tissue transfer, virtually planned the reconstruction using medical modeling software that allowed them to first simulate each step of the operation on a computer. That enabled them to go into surgery with custom-made jigs, or templates, so they knew precisely where and how to cut bones at the correct angles to form a new jaw. The technology, Petrisor says, trims an hour or more off such an intricate surgery.

Nearly four hours after it started, Marilena got an update: Everything was going beautifully.

Ueeck had exposed the site where they'd install Matia's new jawbone. As he did, Petrisor and Wax harvested the right fibula and one rib. A growing child usually can compensate and get by without either bone.

To create the jaw's front portion, the part you might feel if you ran your fingers across your chin and up either side, they attached pieces of fibula to a mandibular reconstruction plate, a titanium assembly resembling a bicycle chain and shaped like a jaw. It would help stabilize Matia's jaw while the bone and soft tissue healed.

Using rib bone and cartilage, they built the jaw's uprights, which extend from the bottom of the ears toward the temples. The surgeons hope the cartilage will enable the jaw to grow as Matia does.

They attached the uprights to the reconstruction plate.

Peering through microscopes and using sutures so fine they make a human hair look bulky, Petrisor and Wax sewed together blood vessels harvested from Matia's leg. The vessels would feed the transplanted bones, helping them mend.

Finally, the surgeons used skin and subcutaneous tissue from the child's leg to craft a new chin.

Surgery took about nine hours.

That evening, in Room 473 of the hospital's new pediatric intensive-care unit, a nurse popped cartoons into a DVD player. Though still sedated, Matia opened his eyes and turned toward the TV. The audio was in Romanian.

***

Marilena stood next to Matia's hospital bed, cradling her son's head in her hand.

Poles held bags of fluid, liquid nutrition and medicine. Electronic monitors blinked news of heart rate, oxygen saturation and such. A tracheostomy tube snaking into Matia's throat helped him breathe, while a floppy-eared stuffed dog, an IV tube taped to one of its front paws, seemed to reach from the edge of the child's mattress and comfort him. Matia sucked his thumb.

Though the day started hours earlier, Marilena still wore flowered pajamas and white socks under her red sandals. On a window seat that served as her bed, arm's reach away from Matia's, her Bible sat open.

They were one week past surgery and she seldom left his side.

During morning rounds, Dr. Mitchell Ross, the intensive-care unit's medical director, asked Marilena and nurses about everything from the boy's feeding patterns to his gastrointestinal function.

Swelling remained around the surgical sites and little things bothered Matia. Nausea washed over him periodically. His skin itched. He was far from the child who, Marilena says, usually has more energy than her other three children combined.

Ross told Marilena that the medical team had almost weaned Matia off the heavy sedatives administered following surgery. Next, they'd dial back on painkillers. Her boy had a 50-50 chance of experiencing the same sort of withdrawal symptoms a drug addict might endure when they quit.

Through the interpreter he reassured her, "Everything is going in the right direction."

Marilena offered some of her limited English, a phrase she repeated often: "Thank you."

As a nurse administered the IV diuretic Lasix to ease fluid retention, it felt uncomfortably cold entering Matia's veins. He squirmed and grimaced.

Marilena stroked his trembling foot, saying in Romanian, "I'm so sorry."

***

A month after surgery, Matia stood in Adrian Petrisor's spacious Beaverton living room. The little boy's leg still was bandaged where surgeons removed his fibula but that didn't stop him from bowing ceremoniously toward his host before launching a karate attack.

Chops and sound effects flew between the two until Adrian grabbed Matia under the arms, lifted him toward the ceiling and twirled. The boy's laugh filled the room.

His energy was back.

He limped from the fibula surgery and, though his face bore scars, his jaw looked nearly normal. He still needed more healing before Daniel Petrisor felt comfortable sending him back to Romania. But the worst was over.

It's not part of his routine with other patients but through late September and early October, Daniel made regular house calls to his brother's home, checking up on Matia. Daniel's wife, Haley, a physical therapist, gave the boy exercises to build strength and stamina. And Caleb, the couple's 2 1/2-year-old son and Matia's new buddy, delivered what seemed the most welcome medicine of all: The two chased and jumped and played every chance they got.

Providence, which charged nothing, estimates the cost of Matia's hospital stay at $104,000. That doesn't include a cent of what the surgeons and other providers would have charged, if they'd charged. Shortly before the end of his hospital stay, Matia, who'd never seen a dentist, was sedated again because a pediatric dental team volunteered to repair cavities in his upper teeth.

That afternoon at Adrian and Monika Petrisor's home, Matia plopped on floor, surrounded by nothing but fun: a plastic dinosaur, a ray gun, a pingpong ball, stuffed animals and much of the cast of Pixar's "Cars," his favorite playthings. He loaded the dino atop a toy Mater, Lightning McQueen's tow truck sidekick, and together they pushed the pingpong ball across the floor.

As Marilena watched, she looked relaxed, like she'd finally slept. For the first time in his life, her son could close his lips, move his jaw and eat just like his brothers and sister.

Hope paid off.

Adrian interpreted for her:

"There's been a lot invested in his life.

"As a mother, I gather all these things in my heart.

"I want for myself and for him ... to really trust God and to never forget what's been done for us."