Jhon Bruce Lee: A Cleft Warrior’s Journey

Celia and Jhon knew their son with a cleft needed a strong name. Jhon liked “Jhon Bruce.” Celia liked “Lee.” They decided to combine the names: Jhon Bruce Lee.

At the time, they had never heard of the martial arts legend, but others showed them the movies soon enough — and the more Bruce Lee movies Jhon watched, and the more his son grew, the more he appreciated the coincidence. The name fit the boy well.

Even before he was born, Jhon Bruce Lee was agile, always in motion, always making you think he was going one way, then suddenly dodging to the other. Celia felt it in the way he moved around inside her womb when she was still only a few weeks pregnant. He kicked so much it worried her, but the doctor assured her everything was as it should be.

It wasn’t until late in the pregnancy that the doctor noticed something wrong. She told Celia to schedule a c-section at a specialized hospital. Celia protested at first that she didn’t want to be away from her family, but the doctor insisted until she agreed. After all, nothing was worth risking her baby’s health. The doctor at the new hospital did one last ultrasound just before the surgery, and that’s when he saw the cleft.

“I almost had a heart attack,” Celia remembered. She broke down crying in the bathroom while changing for her c-section; only the thought that her son needed her gave her the strength to stand up.

At the moment of birth, the doctor went to grab the baby’s legs, but he snapped them back in. The doctor tried again, and with his second breath, he again pivoted them out of reach. The doctor tried it a third time and at last managed to catch Jhon Bruce Lee and pull him out, crying, into the world.

The doctor brought him to Celia, but she couldn’t look at him. “I didn’t want to see him,” she said. “The doctor told me that I had to see him, and they brought him to me. I saw my son’s lip and I got even sadder. My breast milk dried up. I didn’t have any, not a drop. My son couldn’t feed at all.”

A nurse gave her a syringe and taught her how to feed him with it. Stomach full, Jhon Bruce Lee fell asleep, and Celia fell in love.

“Little by little, I started feeling more affection for him. I carried on crying, but I started handling it, even though I kept on wondering why he had been born like that.”

Meanwhile, Jhon was in the waiting room when a nurse approached with a message, “You need to be strong and brave because your son was born with a cleft.”

To Jhon, it was like she was speaking a different language. He had never heard of that before, had never even seen it on TV, and while he was asking questions, trying to figure out what was happening with his baby, they brought him out and he saw the cut in his lip.

“What have you done to my son?” he yelled.

“That’s what we’ve been trying to explain to you,” the nurse said. He understood then that his baby had a birth difference and started to weep.

“I was happy but also sad,” he remembers, now.

The nurses quickly explained that his son was going to be okay, that roughly one in every 700 babies was born with a cleft, and that surgery was available. Knowing the facts comforted Jhon.

“I was young and I needed to hang in there. I needed to keep going with faith, asking God for help,” he said.

The Angel in the Park

Jhon Bruce Lee spent his first days fighting to stay alive. Celia’s milk continued to run dry, and even using a bottle, food dribbled out Jhon Bruce Lee’s nose and ran down his throat, choking him. He was losing weight by the hour.

Jhon worked long hours in the field to earn a meager salary that had to support the entire family. They scoured Lima with increasing desperation searching for a surgery they could afford.

One day, when Jhon Bruce Lee was three months old, Celia found herself sitting all alone in a park with an infant she could not feed and who could not stop crying. Something inside her broke, and she collapsed in tears, too.

A moment later, a woman approached to ask what was wrong.

“I told her about his condition and said that it made my life lose all meaning,” Celia remembers. She showed this stranger her baby, and the woman met him with a smile.

“Not to worry,” she said. “There’s a clinic nearby that can cure him.” She even offered to take her there. Celia was certain she wouldn’t be able to afford it but knew she also couldn’t afford to say no.

The woman led her to the San Borja Clinic, a local cleft center run by Smile Train partner Misión Caritas Felices (MCF). The doctors welcomed them warmly and took Jhon Bruce Lee in for tests to determine his fitness for cleft surgery. For Celia, in this state, that was too much.

Kathy Sandoval, the coordinator at MCF, noticed her agitation and asked what was wrong. Celia told her everything: “I have no milk for my son, no money — I don’t even have boiling water because my thermos broke and I can’t afford another one. Can you please just perform the surgery right now?”

Kathy reassured her that her baby was in the best hands, then led her to where they kept the infant milk and hot water and told her to take as much as she needed.

As for doing the surgery that day, the doctors determined that would not be safe; Jhon Bruce Lee’s hemoglobin was too low. They scheduled him for surgery in three months and advised his family to put him on an all-liquid diet in the meantime to get his weight up.

Enter the Surgeon

Three months later, he was cleared for his first surgery, on his cleft lip. His parents had followed the doctors’ instructions not to feed him before surgery, and by the time he got to the hospital, Jhon Bruce Lee was so cranky that he accidentally pushed his surgeon, Dr. Miryam Lock, nearly toppling her over. “I can’t believe how strong your boy is!” she gasped.

The surgery was a success, but Dr. Lock was clear that this was only the beginning of his journey. The time after cleft lip surgery might be the most misunderstood part of cleft treatment. With his lip healed, the most visible part of his cleft was gone, but with his palate still open, Jhon Bruce Lee was still at severe risk of malnutrition and many of the other severe health complications clefts cause.

So as Celia and Jhon held their baby and marveled at her skill, Dr. Lock taught them how to care for him over the next few days to ensure his stitches didn’t rip open, then scheduled his next surgery, to heal his cleft palate, for when he turned one year old. She also took the opportunity to introduce them to the rest of the cleft team, including the orthodontist, dentist, speech therapist, and psychosocial counselor, and assured them that Smile Train would sponsor all of this essential care for as long as Jhon Bruce Lee needed. Looking at their sleeping infant, still with thick black stitches running from his mouth to his nose, it seemed impossible that he would ever need their services. But meeting the team, taking in their encouragement, gave them hope. On their way out, Kathy sent them home with diapers and milk.

That night, and for weeks afterward, Celia and Jhon slept with Jhon Bruce Lee between them in bed, each taking shifts monitoring their baby and spouse to make sure the former didn’t move and risk his stitches and the latter didn’t roll over and crush him. By day, Jhon went off to the fields while Celia did everything she could to feed him.

It was a long, difficult nine months, but the family found unimagined strength to meet this unimagined challenge.

At last, after Jhon Bruce Lee was at last wheeled out of the operating room following his cleft palate surgery, Celia peeked in his mouth and ran her finger against its new, solid roof.

“It’s a miracle,” she cried.

A Boy of Action

Now Jhon Bruce Lee had had his first surgeries, but his struggle was not over. As he started school, other children bullied him for the way he spoke, the way his nose looked. He would come home in tears, asking why he had been born like this when his older sister was healthy.

“I suffered with him,” Celia said. “I told him he would get cured and I comforted him.”

They weren’t in the fight alone; Jhon Bruce Lee’s cleft team at MCF always had his back. They helped him heal and trained him to take pride in who he is, to flip his negative experiences into a source of strength against his attackers.

That extra confidence supercharged Jhon Bruce Lee. Today, he is a high-energy and highly extroverted 12-year-old who loves school and dreams of growing up to be either a police officer or a truck driver.

“I’m going to help him become whatever he wants to be, to be hard working, a good citizen, and get ahead. He will make it,” Jhon said.

“It was a true struggle,” Celia said, reflecting on her family’s cleft journey. “Having a kid like this takes bravery; people discriminate against you. But my advice to other cleft moms is to hang in there, get your kids treatment.

“Smile Train gave my son back his smile. To all who made it possible, we can only say thank you.”

“Thank you, Smile Train. Thank you, MCF,” Jhon added. “Keep on helping children. God bless you.”