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Patient Story Guatemala

See This Mom Conquer Her Fears As She Seeks Help for Her Son

Patient Story Guatemala

See This Mom Conquer Her Fears As She Seeks Help for Her Son

By the time Dilan was 2 years old, he and his mom, Sandy, had traveled to two previous Operation Smile surgical programs seeking care for his cleft lip. Photo: Carlos Rueda.

The moment Sandy saw her newborn son’s smile, she knew their lives would never be the same again.

“I felt something that was so painful, because I had never had a baby like that, and neither did my family,” Sandy recalled after seeing her son, Dilan, for the first time.  

“I said, ‘Ma’am, he has a problem with his lip, doesn’t he?’ Then, they took him away.”

Fortunately, the midwife was well educated about cleft conditions and quickly assured Sandy that Dilan wouldn’t have to grow up with a cleft lip. 

Even with the reassurance that cleft conditions could be repaired through surgery, Sandy found herself overwhelmed with emotions and questions. 

“I started crying. I was sad,” she said. “I spent the whole night wondering why he was born like that.”

Sandy wondered if she had done something during her pregnancy that caused Dilan’s cleft condition. Without definite answers to calm her uncertainty, Sandy blamed herself.

“Then my mother started giving me words of encouragement,” she said. “She told me not to get like that. That in the name of God, God was going to help us. There was going to be a solution.”

But as Dilan grew older, surgery still remained out of reach, and he began to realize that his smile looked different from other children’s. 

“There were children who were afraid of him,” Sandy recalled. “They stared at him. Once, a girl went away from him because she was afraid, and she told her mom, ‘Oh, how scary!’”

Witnessing people treat Dilan this way was devastating for Sandy. She thought her son was beautiful and wanted the people in her community to look past his cleft condition and see the person he was behind his smile.

Dilan, 2 years old, before surgery. Photo: Carlos Rueda.

“Out of nowhere, he started to say that a dog did that to him,” Sandy said. “He started to touch his lip and say, ‘a dog.’”

Without a better explanation for the cause of his cleft lip, Sandy didn’t correct Dilan when he began telling people about his smile. All Sandy wanted to do was protect her son. She never wanted Dilan to think that his cleft condition was the result of something that he had done wrong.

Sandy had no idea where to turn for help. Many in her life were recommending a number of places, but she was overwhelmed and unsure of who to trust. 

“I’m very fearful about things with doctors,” she said. “I was afraid if they operated on him. I didn’t know what to do.”

In some low-income countries, there is fear of the unknown when it comes to doctors and medical care. Many parents like Sandy encounter stories that deepen the stigma and apprehension toward hospitals, oftentimes preventing them from seeking care for their children or themselves. 

"Who knows how they’re going to treat him or what they’ll do to him,” Sandy said.

She was fearful, but she also knew that overcoming her fear could potentially help Dilan have a healthier life one day. That’s when she remembered Yuri, a family friend whose son was born with a cleft condition. 

After reaching out to Yuri to explain what Dilan was going through, Sandy discovered that Yuri’s son received his new smile from Operation Smile Guatemala three years earlier. Yuri gave her more information about Operation Smile as well as a way to contact their local volunteer team of medical professionals. 

Initially, Sandy was hesitant to trust anyone to care for her son. But after hearing Yuri’s personal experience with the organization, Sandy decided to place her trust in Operation Smile. 

In the care of Operation Smile medical volunteers, Sandy felt confident that her son would receive the best possible care for his cleft lip. Photo: Carlos Rueda.

From the moment she arrived at the Operation Smile program site, Sandy felt confident that the volunteers would care for them and provide Dilan with the safe surgery he deserved.

“I’m very thankful because I’ve seen how they pay attention to my son,” Sandy said. “They’re very kind. They love every baby, and they have shown they love mine. I’ve seen kindness. It’s beautiful how they put their heart into what they do.”

But Sandy and Dilan’s path toward his new smile came with unexpected challenges. 

“When he was about 7 months old, they were going to operate on him, but he was sick with a cold,” Sandy said. “The second time they were going to operate on him, I stayed there overnight. Then around midnight, he had fever. And then, at about eight in the morning, he was getting better. But because suddenly the fever appeared, they could no longer operate on him.”

Sandy and Dilan returned home once again. The care that Dilan needed was so close, yet somehow still just out of reach.

Despite traveling to Operation Smile Guatemala twice and learning that there were other organizations and hospitals that could help, Sandy refused to have her son receive surgery from anyone else.

“They might have recommended me other places, but I didn’t want to change,” she said. “I felt confident, welcomed by all. I trust you. I know he’s in excellent hands. I didn’t want to find a new place.” 

Then, Sandy’s search for care was put on hold indefinitely as the world began to experience the first effects of the COVID-19 pandemic.

During a 2020 surgical program in Guatemala City, 2-year-old Dilan and his mom, Sandy, feel hopeful as they face their third attempt at surgery. Photo: Carlos Rueda.

“When the pandemic started and lockdown began, there was chaos,” Sandy said. “I thought they weren’t going to operate on him.”

Health systems around the world were pushed to their limits and many procedures were postponed. While the pandemic made it temporarily unsafe to provide surgery, the local team in Guatemala continued to stay in contact with Sandy and Dilan. Ensuring them that when it was safe, they would give Dilan his new smile. 

“I’m always going to be grateful to all the people who have helped me because they’ve never left me helpless since our first visit,” Sandy said. “I felt so safe and so protected there. I liked the way they treated me. I will always be grateful.”

It would be almost a year and a half until Dilan would finally receive surgery to repair his cleft lip. 

Dilan with his mom, Sandy, one year after cleft lip surgery. Photo: Jasmin Shah.

“If I hadn’t found Operation Smile, I don’t know what I would have done,” Sandy said.

Dilan is now living a happier life, and Sandy says she doesn’t worry about how he will be treated by other children. 

Two years after surgery, Dilan and his friend play with a soccer ball together outside his family’s home in Guatemala City. Photo: Jasmin Shah.

“Everything changed because now the kids don’t stare at him anymore with fear.”

As a 4-year-old, Dilan is a happy child with new and brighter opportunities for his future. He likes to play ball and loves toy cars. 

“To me, it’s amazing to see my son like this,” Sandy said. “This is very joyful for me. I am very happy and grateful to God and to you. To Operation Smile. I don't have the words. I'll always be extremely thankful. Of everything, I want the best for my baby.”

Four-year-old Dilan, today. Photo: Jasmin Shah.

Our promise of improving health and dignity during the COVID-19 pandemic endures. Once again, we’re providing surgery and in-person care while taking stringent measures to keep families safe. Hope is on the horizon. And we remain focused on what cleft care makes possible for children, helping them to better breathe, eat, speak and live with confidence.

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