Reshaping lives — one at a time
When Danilo Ujupma smiled, the gray hospital room with cracked, dust-covered windows got a little brighter.
It was a full smile, with a wide open mouth that stretched across his face, making his cheeks pink and his eyes dance.
But just as quickly as the 12-year-old Shuar Indian boy could produce that 1,000-watt smile, he could shut down and go to a dark place where no one else could go with him.
Danilo was born with three of his middle fingers fused together on his right hand. He could move his thumb and little finger, but his three middle fingers looked like a little, fleshy bundle tied up in a knot.
The boy was waiting his turn for surgery. Danilo's hope was that he would have at least two normally functioning fingers in his right hand after it was all done. Wearing a green hospital gown, he was fiddling with his black, silky hair that fell down to his shoulders.
'THIS IS VERY EMBARRASSING FOR ME'
He chatted with other children who were waiting with him. But he always hid his deformed right hand. He would push it inside his gown or slide it under his thigh so no one could see it.
"Danilo is not happy," said his mother, tears welling up in her eyes. "Other kids tell him things that don't make him feel very good. I can't bear to see him like this."
Danilo's eyes started to fill up as he listened to his mother talk. He bent his head way down, pressing his chin to his chest.
"This is very embarrassing for me," he said softly, without looking up.
"The kids treat him badly," his mother says, choking up. "They talk bad."
Danilo eats and writes with his left hand. They had taken him to several doctors in the area, but no one could help him. Danilo and his mother rode a bus for more than a day to come to Macas from their hometown of Cochenzo.
"There were no other doctors who could do it," the mother said. "We heard the North American doctors were coming. We came as soon as we could."
Hoag Hospital nurse Jane Collins, who was near the boy, hugged him as he broke down and cried.
"It's going to be OK, Danilo," the recovery room nurse said, comforting him and gently rubbing his back. "You're going to be fine."
But as Danilo lay on the operating table under anesthesia, surgeons Larry Nichter and Robert Burns launched into a discussion.
"We can't do two sides of his finger at the same time," Burns said. "The arteries run on either side of the finger. There's the risk of both arteries going into spasm and if that happens, the finger could die."
So they decided to do "half the surgery," which meant Danilo would get two new, functional fingers, instead of three.
"In a few days, the bandages will come off and he'll have two good fingers," Nichter said, smiling. "I wish I could see the look on his face then."
As Nichter worked on separating the fingers, Burns did a skin graft by removing a patch of skin from Danilo's abdomen and covering his "new fingers" with the "new skin."
"The skin has different thickness in different parts of the body," Burns explained. "The skin on our abdomen is the same thickness as the skin on our fingers."
TAUNTED AND TEASED
As Danilo was getting started, 7-year-old Maritza Mayorga was recovering from her fifth surgery to correct a cleft palate that left her with an opening in the roof of the mouth.
Maritza had her first surgery when she was an 11-month-old baby.
"Basically, she has an open palate," Nichter said. "So she can't enunciate words or make plosive sounds like 'puh' or 'tuh.' So her speech is not clear.
"Hopefully, this will be the last surgery she'll ever need."
Maritza's mother Carmen Wampash hoped so.
"Maritza's friends tease her," she said. "Her teacher says she can't understand what Maritza's saying."
Relatives give her a tough time too.
"They all have their theories about why she was born this way," Wampash said. "All I wish is for it to be fixed so her speech improves."
Nichter said he closed the gap in the oral and nasal side of her palate.
"That will also prevent liquids from squirting out her nose when she drinks something," he said.
CALL FOR CREATIVITY
As 2-year-old Kevin Coro lay on the table to get his cleft palate fixed, Burns was a tad nervous.
"We're running out of anesthesia," he said.
On the first day of surgery hospital staff had realized that the anesthetic they were about to use had expired five years ago.
"They told us they had enough," Burns said. "But this morning there was about a quarter of an inch of liquid in that bottle."
So, the doctors were waiting for someone to go to a nearby town called Sucua and buy a few bottles.
"Hopefully the machine won't dry out before they arrive," Burns said. After a few anxious moments, one bottle did arrive from Sucua and the surgeons proceeded with their work.
Every day in the operation room bore testimony to the nurses' ingenuity.
"We didn't have tourniquets for the hand surgeries," Virginia Burns said, referring to a cloth that helps cut off blood circulation to the hand before surgery to prevent excessive bleeding.
So, Fodor and Burns, came up with a substitute. They cut off a piece of cloth from the blood pressure monitor and wrapped it up tightly around the patient's hand.
"Whatever works, works for us," Fodor said.
Recovery room nurse Jane Collins' job was different. She took care of patients after the surgery. Collins often dealt with patients waking up from the anesthesia. While children bawled because of the uncertainty about where they were and what happened to them, adults were disoriented and often tried to pull out their oxygen tube or get out of bed.
"It's quite normal for them to feel that way," Collins said, as she held her patients tightly, sitting by their side.
"It's all right," she would tell her patients in Spanish, as their drowsy eyelids fluttered. "Your operation just got over. It's OK. You're going to be fine."
Collins also brightened up her recovery room with her own brand of ingenuity. She blew soap bubbles using dishwashing soap and straws to entertain her little patients as they waited to go into the operation room.
Collins spent almost three hours trying to pacify 3-year-old Joel Lucero. The boy had surgery on his left hand because two of his fingers were fused together from a burn injury. Lucero cried nonstop for two hours, but Collins sat with him on his bed, hugged him tightly and wiped away his tears, while making sure he didn't rip off his oxygen tube.
MORE THAN A CUT LIP
The nurse, however, didn't have much trouble with Katherine Fajardo, a 2-year-old girl with a double cleft lip, who woke up peacefully after the surgery. Before she went into surgery, Katherine's upper lip looked like a shapeless piece of pinkish-red Jell-O. The girl, who was abandoned by her mother, was brought in to the hospital and cared for by a family member.
"This is a very dramatic surgery," Nichter said.
It involved a three-step process. First, Nichter had to reconstruct the inside of the lip.
"Then, I reconstruct the muscle so the child is able to do things like kissing or whistling," he explained. "The last step is to reconstruct the outside of the lip."
Meanwhile, Brigit Aray, who was waiting her turn outside, was scared.
"Don't poke me," she cried, tears streaming down her face. "Mommy!"
The 7-year-old, who minutes ago was chatting away with nurses and darting all around the hospital lawns, hugged her mom tightly as she sensed something was happening around her.
Most of Brigit's right thumb was missing from birth. But that never stopped her from climbing trees, playing soccer, hanging out with friends, smiling at total strangers — and just being Brigit.
THE LANGUAGE BARRIER
But as she was taken away to the operation room, little Brigit's cries got louder.
"Don't hurt me," she cried out in Spanish as the nurses made her lie down on the table. "Don't poke me."
"Brigit, we're not going to hurt you," nurse Fodor told her in English.
"Don't hurt me," Brigit cried out in Spanish.
"Listen, Brigit," Fodor said, tenderly, continuing to speak in English. There were tears in Fodor's eyes now.
"Oh my God," Fodor turned away, helpless.
"This is so frustrating," she said, wiping away tears from under her surgical mask. "I want to help. I want to tell her she's going to be OK. And I want to tell her we're not going to poke her.
"I hate it when I can't communicate with the patients."
But, within seconds, Brigit was asleep. Nichter saw the bone of her hand was in tact and made a separation between her deformed thumb and the second finger, creating an illusion of a longer thumb. Burns carved off some skin from her abdomen to attach to her thumb.
"It's not just for appearance," Nichter said. "She can actually move her thumb and use her hand better."
AN ARTIST'S TOUCH
Eight-year-old Patricia Najonday's story is almost unbelievable. When the little girl was 2, she stuck something up her nose and never told her mother about it. She was infected several times after that and the infection ate up her left nostril. A part of her nose had sunken into a hole in her face and looked like it was smashed in.
"What she needs is basically nose reconstruction," Nichter said.
He "created" her nose with a graft and a cartilage from her ear.
"It's amazing when you think about the possibilities," Nichter stated simply after completing the surgery. "It's like building something with your hands. It's exciting."
Burns and Nichter also operated on patients with tumors and burn scars. Nichter's longest surgery lasted about four hours when he worked on a man with a machete injury that had left him unable to bend three fingers in his right hand.
"God gave 85% of us an extra tendon in each of our arms and legs just so we can perform this surgery," Nichter joked.
What he was about to do was remove one tendon from the man's arm, cut it into three pieces and use each piece in each of the invalid fingers so he could bend them again.
"We need only one of those two tendons for normal function, which is what makes this surgery possible," Nichter explained.
When it was all done the doctors and nurses had worked on 47 patients, on whom they had performed 74 surgical procedures over five days. They had set out with 50 patients on their list, but three were no-shows.
Each day of surgery was 12 to 16 hours long and each day began and ended with the doctors' rounds when they visited their patients to monitor their recovery and give instructions to hospital staff about their diet, care or discharge from the hospital.
When the team visited Danilo, who was recovering from his hand surgery, he was quiet, but seemed relaxed.
"I can't feel anything inside the bandage," he said, trying to look inside.
"Keep his hand up," Nichter instructed Danilo's mother.
"You have two new fingers now," Nichter told him through a translator.
Danilo smiled.